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Income and expense are whole-filing amounts associated with this lobbyist, not personal compensation or an allocated share.
No topic inference: each bill number appears in source LDA issue text assigned to this lobbyist.
American Rescue Plan Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid. Supported enhancements to Medicaid coverage as part of the American Recovery Plan (H.R.1319)
American Rescue Plan Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Specific issues are shown only where the LDA source assigned them to this lobbyist. Targets apply to the associated filing.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2021 · first_quarter · Q1
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Advocated for passage of measures that would provide financial assistance to nonprofits providing essential healthcare services to the neuromuscular disease community throughout the COVID-19 pandemic.
Source: Senate LDA
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for reintroduction of the ACT for ALS Act. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for equitable access to the COVID-19 vaccines for the neuromuscular disease community. Advocated for a variety of items to included within the American Rescue Plan Act (H.R.1319) including Medicaid coverage provisions, marketplace affordability and access provisions, COBRA modifications, and public health provisions pertaining to access to care, treatment, and vaccines.
Transportation Security Preparedness Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Newborn Screening Saves Lives Reauthorization Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for reintroduction of the ACT for ALS Act. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for equitable access to the COVID-19 vaccines for the neuromuscular disease community. Advocated for a variety of items to included within the American Rescue Plan Act (H.R.1319) including Medicaid coverage provisions, marketplace affordability and access provisions, COBRA modifications, and public health provisions pertaining to access to care, treatment, and vaccines.
Newborn Screening Saves Lives Reauthorization Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for reintroduction of the ACT for ALS Act. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for equitable access to the COVID-19 vaccines for the neuromuscular disease community. Advocated for a variety of items to included within the American Rescue Plan Act (H.R.1319) including Medicaid coverage provisions, marketplace affordability and access provisions, COBRA modifications, and public health provisions pertaining to access to care, treatment, and vaccines.
Air Carrier Access Amendments Act of 2021
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers".
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers".
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
CARERS Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
ALS Disability Insurance Access Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
ALS Disability Insurance Access Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
ALS Disability Insurance Access Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
ALS Disability Insurance Access Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
Medical Nutrition Equity Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Newborn Screening Saves Lives Reauthorization Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Newborn Screening Saves Lives Reauthorization Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
Newborn Screening Saves Lives Reauthorization Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Newborn Screening Saves Lives Reauthorization Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Access to Genetic Counselor Services Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Access to Genetic Counselor Services Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
Access to Genetic Counselor Services Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Access to Genetic Counselor Services Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Access to Genetic Counselor Services Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
Access to Genetic Counselor Services Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
Access to Genetic Counselor Services Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Access to Genetic Counselor Services Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
No Surprises Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
No Surprises Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
No Surprises Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
No Surprises Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
No Surprises Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
No Surprises Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Disability Employment Incentive Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
Disability Employment Incentive Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
Disability Employment Incentive Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities. Advocated for passage of the Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704).
Disability Employment Incentive Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
Advancing Access to Precision Medicine Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
Advancing Access to Precision Medicine Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Advancing Access to Precision Medicine Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Advancing Access to Precision Medicine Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Advancing Access to Precision Medicine Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Advancing Access to Precision Medicine Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
Advancing Access to Precision Medicine Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
Advancing Access to Precision Medicine Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
Creating Hope Reauthorization Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Ban Surprise Billing Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
Consumer Protections Against Surprise Medical Bills Act of 2020
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
Families First Coronavirus Response Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Families First Coronavirus Response Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
All Dependent Children Count Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
Coronavirus Housing Counseling Improvement Act of 2020
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities. Advocated for passage of the Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704).
Coronavirus Housing Counseling Improvement Act of 2020
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
The Heroes Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
The Heroes Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
The Heroes Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Accelerating Access to Critical Therapies for ALS Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
STOP Surprise Medical Bills Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
STOP Surprise Medical Bills Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
STOP Surprise Medical Bills Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
STOP Surprise Medical Bills Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
STOP Surprise Medical Bills Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
STOP Surprise Medical Bills Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Lower Health Care Costs Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
Lower Health Care Costs Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Lower Health Care Costs Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Lower Health Care Costs Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Lower Health Care Costs Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Lower Health Care Costs Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
The Newborn Screening Saves Lives Reauthorization Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
The Newborn Screening Saves Lives Reauthorization Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
The Newborn Screening Saves Lives Reauthorization Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
The Newborn Screening Saves Lives Reauthorization Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Disability Employment Incentive Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
Disability Employment Incentive Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities. Advocated for passage of the Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704).
Disability Employment Incentive Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
Disability Employment Incentive Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
All Dependents Count Act of 2020
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
Promising Pathway Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Promising Pathway Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
Promising Pathway Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
ALS Disability Insurance Access Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
ALS Disability Insurance Access Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
ALS Disability Insurance Access Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
ALS Disability Insurance Access Act of 2019
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
A joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers".
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
A joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers".
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Foreign Business Bribery Prohibition Act of 2017
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549).
Foreign Business Bribery Prohibition Act of 2017
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Foreign Business Bribery Prohibition Act of 2017
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Foreign Business Bribery Prohibition Act of 2017
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Columbia River In-Lieu and Treaty Fishing Access Sites Improvement Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Columbia River In-Lieu and Treaty Fishing Access Sites Improvement Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Columbia River In-Lieu and Treaty Fishing Access Sites Improvement Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Columbia River In-Lieu and Treaty Fishing Access Sites Improvement Act
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549).
To provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect.
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, adequate insurance coverage, and access to care. Advocated for the introduction and passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid. Advocated in opposition to proposed action on the part of the Office of Management and Budget to amend the federal poverty measure in a manner that may impact the ability of individuals with neuromuscular disease and their caregivers to access necessary safety-net supports such as Medicaid, state health programs, and other services. Advocated in favor of activities to improve outreach and enrollment for individuals to who acquire health insurance on the individual marketplace including: (1) a provision added to H.R. 987 that would require the Department of Health and Human Services to resume activities related to outreach and educational activities for open enrollment; and (2) H.R.1386, Expand Navigators Resources for Outreach, Learning, and Longevity (ENROLL) Act of 2019. Advocated for passage of H.R. 986, the Protecting Americans with Preexisting Conditions Act of 2019, which would require the Administration to rescind its Section 1332 State Relief and Empowerment Waivers Guidance, released on October 22, 2018 (1332 guidance). The guidance would allow states to let individuals use advanced premium tax credits to purchase non-compliant short-term, limited duration insurance plans-which could further draw younger, healthier people out of the risk pool for comprehensive insurance and drive up premiums for those who need comprehensive coverage, such as individuals with neuromuscular conditions. Also advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect.
To provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect.
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid. Advocated in opposition to proposed action on the part of the Office of Management and Budget to amend the federal poverty measure in a manner that may impact the ability of individuals with neuromuscular disease and their caregivers to access necessary safety-net supports such as Medicaid, state health programs, and other services. Advocated in favor of activities to improve outreach and enrollment for individuals to who acquire health insurance on the individual marketplace including: (1) a provision added to H.R. 987 that would require the Department of Health and Human Services to resume activities related to outreach and educational activities for open enrollment; and (2) H.R.1386, Expand Navigators Resources for Outreach, Learning, and Longevity (ENROLL) Act of 2019. Advocated for passage of H.R. 986, the Protecting Americans with Preexisting Conditions Act of 2019, which would require the Administration to rescind its Section 1332 State Relief and Empowerment Waivers Guidance, released on October 22, 2018 (1332 guidance). The guidance would allow states to let individuals use advanced premium tax credits to purchase non-compliant short-term, limited duration insurance plans-which could further draw younger, healthier people out of the risk pool for comprehensive insurance and drive up premiums for those who need comprehensive coverage, such as individuals with neuromuscular conditions. Also advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect. Advocated maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439)
To provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect.
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for passage of H.R. 986, the Protecting Americans with Preexisting Conditions Act of 2019, which would require the Administration to rescind its Section 1332 State Relief and Empowerment Waivers Guidance, released on October 22, 2018 (1332 guidance). The guidance would allow states to let individuals use advanced premium tax credits to purchase non-compliant short-term, limited duration insurance plans-which could further draw younger, healthier people out of the risk pool for comprehensive insurance and drive up premiums for those who need comprehensive coverage, such as individuals with neuromuscular conditions. Also advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439)
To provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect.
Client: MUSCULAR DYSTROPHY ASSOCIATION, INC. · Firm: MUSCULAR DYSTROPHY ASSOCIATION, INC.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, insurance coverage, and access to care. Advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect. Advocated for the introduction of the reauthorization of the Newborn Screening Saves Lives Act.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for reintroduction of the ACT for ALS Act. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for equitable access to the COVID-19 vaccines for the neuromuscular disease community. Advocated for a variety of items to included within the American Rescue Plan Act (H.R.1319) including Medicaid coverage provisions, marketplace affordability and access provisions, COBRA modifications, and public health provisions pertaining to access to care, treatment, and vaccines.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid. Supported enhancements to Medicaid coverage as part of the American Recovery Plan (H.R.1319)
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for further health insurance marketplace financial and COBRA enhancements as part of the American Recovery Plan.
Advocated for enhanced COBRA benefits for individuals who have lost their job but are seeking insurance.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout theCOVID-19 pandemic. Advocated for the reintroduction of the ACT for ALS, legislation that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases.
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA
Filing targets: Centers For Disease Control & Prevention (CDC), Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), SENATE, Transportation, Dept of (DOT)
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2020 · fourth_quarter · Q4
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic.
Advocated for passage of measures that would provide financial assistance to nonprofits providing essential healthcare services to the neuromuscular disease community throughout the COVID-19 pandemic.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing and robust funding of the national newborn screening program.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2020 · third_quarter · Q3
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and related COVID-19 packages, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. Continuing to support passage of legislation and proposals to protect patients from surprise medical billing and hold patients harmless.
Advocated for passage of measures that would provide financial assistance to nonprofits providing essential healthcare services to the neuromuscular disease community throughout the COVID-19 pandemic.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing and robust funding of the national newborn screening program.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2020 · second_quarter · Q2
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549). Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated on the Promising Pathway Act (S.3872) and the ACT for ALS Act (H.R.7071). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. H.R. 6800, HEROES Act and Senate-led COVID-19 package, support various provisions relevant to people with NMDs including increased federal support for state Medicaid programs; Medicaid maintenance of effort provisions; nationwide reopening of Marketplace special enrollment period; expansion of paid sick leave and paid family and medical leave; making permanent flexibilities to allow Medicare beneficiaries to continue accessing healthcare through telehealth; more resources to enhance testing and contact tracing in underserved communities; opposing waivers from IDEA and the Rehab Act; and better data collection on the impact of COVID-19 on people with disabilities. H.R. 6420/S. 3652 All Dependents Count Act, support passage. H.R. 3630, No Surprises Act; S. 1895, Lower Health Care Costs Act; S. 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019; H.R. 5800, Ban Surprise Billing Act; H.R. 5826 Consumer Protections Against Surprise Medical Bills Act, support passage of legislation to protect patients from surprise medical billing that holds patients harmless H.R. 127, Compassionate Access, Research Expansion and Respect States (CARERS) Act, support passage
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing funding of the national newborn screening program.
Advocated for passage of measures that would provide financial assistance to nonprofits providing essential healthcare services to the neuromuscular disease community throughout the COVID-19 pandemic.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2020 · first_quarter · Q1
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for funding for the FDA Orphan Products Grants Program. Advocated for passage of the Medical Nutrition Equity Act (H.R.2501). Advocated for Members to join the Rare Disease Caucus and the ALS Caucus. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439) Advocated for passage of Families First Coronavirus Response Act (HR 6201) and Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid.
Advocated for provisions that enable ongoing access to necessary medications and treatments for neuromuscular disease patients throughout the COVID-19 pandemic.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing funding of the national newborn screening program.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549).
Advocated for passage of the Coronavirus Preparedness and Response Supplemental Appropriations Act, 2020 including provisions related to relief for non-profits.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for passage of Families First Coronavirus Response Act (HR 6201). Advocated for a joint resolution providing for congressional disapproval under chapter 8 of title 5, United States Code, of the rule submitted by the Secretary of the Treasury and the Secretary of Health and Human Services relating to "State Relief and Empowerment Waivers" (H.J. Res. 74 / S.J. Res. 52).
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities. Advocated for passage of the Coronavirus Preparedness and Response Supplemental Appropriations Act (HR 6704).
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2019 · fourth_quarter · Q4
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid.
Advocated for passage of the ALS Disability Insurance Act (HR 1407, S 578) which would eliminate the five month waiting period for individuals with ALS to obtain Social Security disability insurance.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2019 · third_quarter · Q3
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549).
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2019 · second_quarter · Q2
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, adequate insurance coverage, and access to care. Advocated for the introduction and passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid. Advocated in opposition to proposed action on the part of the Office of Management and Budget to amend the federal poverty measure in a manner that may impact the ability of individuals with neuromuscular disease and their caregivers to access necessary safety-net supports such as Medicaid, state health programs, and other services. Advocated in favor of activities to improve outreach and enrollment for individuals to who acquire health insurance on the individual marketplace including: (1) a provision added to H.R. 987 that would require the Department of Health and Human Services to resume activities related to outreach and educational activities for open enrollment; and (2) H.R.1386, Expand Navigators Resources for Outreach, Learning, and Longevity (ENROLL) Act of 2019. Advocated for passage of H.R. 986, the Protecting Americans with Preexisting Conditions Act of 2019, which would require the Administration to rescind its Section 1332 State Relief and Empowerment Waivers Guidance, released on October 22, 2018 (1332 guidance). The guidance would allow states to let individuals use advanced premium tax credits to purchase non-compliant short-term, limited duration insurance plans-which could further draw younger, healthier people out of the risk pool for comprehensive insurance and drive up premiums for those who need comprehensive coverage, such as individuals with neuromuscular conditions. Also advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect.
MUSCULAR DYSTROPHY ASSOCIATION, INC. via MUSCULAR DYSTROPHY ASSOCIATION, INC.
2019 · first_quarter · Q1
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, and the Centers for Disease Control and Prevention.
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA), the Federal Aviation Administration Reauthorization Act of 2017, and the FAA Reauthorization Act of 2018,
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, insurance coverage, and access to care. Advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect. Advocated for the introduction of the reauthorization of the Newborn Screening Saves Lives Act.
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2018 · fourth_quarter · Q4
FDA funding contained in H.R.5691/H.R. 6147/S. 2976 - Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act for FY2019; DOT implementation of the ACAA in H.R. 6072/S.3023 - Transportation, Housing and Urban Development, and Related Agencies Appropriations Act for FY2019 and H.R. 6147, the Interior, Environment, Financial Services and General Government, Agriculture, Rural Development, Food and Drug Administration, and Transportation, Housing and Urban Development Appropriations Act, 2019.
Implementation of the Air Carrier Access Act (ACAA); S. 1405 - the Federal Aviation Administration Reauthorization Act of 2017; and H.R. 4 - FAA Reauthorization Act of 2018
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2018 · third_quarter · Q3
FDA funding contained in H.R.5961/S. 2976 - Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act for FY2019; research funding for NIH and newborn screening activities of the CDC and HRSA contained in S. 3158 - Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act for FY2019; DOT implementation of the ACAA in H.R. 6072/S.3023 - Transportation, Housing and Urban Development, and Related Agencies Appropriations Act for FY2019
Health care issues affecting individuals with neuromuscular disease, including therapy development and newborn screening. Health care reform including H.R. 750 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2017; S. 379/H.R. 1171 - ALS Disability Insurance Access Act
Advocated for passage of the Disability Employment Incentive Act (S.255, HR 3992) to create tax credits to incentivize the hiring and retaining of individuals living with disabilities.
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for passage of H.R. 4393, the Advancing Access to Precision Medicine Act, provide for a State option under the State Medicaid plan to provide DNA sequencing clinical services for certain children. Advocated for passage of H.R. 3235, the Access to Genetic Counselor Services Act of 2019, to provide for expanded coverage of services provided by genetic counselors. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for passage of H.R. 986, the Protecting Americans with Preexisting Conditions Act of 2019, which would require the Administration to rescind its Section 1332 State Relief and Empowerment Waivers Guidance, released on October 22, 2018 (1332 guidance). The guidance would allow states to let individuals use advanced premium tax credits to purchase non-compliant short-term, limited duration insurance plans-which could further draw younger, healthier people out of the risk pool for comprehensive insurance and drive up premiums for those who need comprehensive coverage, such as individuals with neuromuscular conditions. Also advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect. Issues related to surprise medical billing, including HR 3630, the No Surprises Act; S 1895, the Lower Health Care Costs Act; S 1531, the Stopping the Outrageous Practice of Surprise Medical Bills Act of 2019. Advocated for maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439)
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA) and the Federal Aviation Administration Reauthorization Act of 2017. Advocated for passage of the Air Carrier Access Amendments Act (S. 669, H.R. 1549).
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for ongoing funding of the national newborn screening program.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Natl Institutes of Health (NIH), Office of Management & Budget (OMB), SENATE, Transportation, Dept of (DOT)
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507 / S. 2158, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid. Advocated in opposition to proposed action on the part of the Office of Management and Budget to amend the federal poverty measure in a manner that may impact the ability of individuals with neuromuscular disease and their caregivers to access necessary safety-net supports such as Medicaid, state health programs, and other services. Advocated in favor of activities to improve outreach and enrollment for individuals to who acquire health insurance on the individual marketplace including: (1) a provision added to H.R. 987 that would require the Department of Health and Human Services to resume activities related to outreach and educational activities for open enrollment; and (2) H.R.1386, Expand Navigators Resources for Outreach, Learning, and Longevity (ENROLL) Act of 2019. Advocated for passage of H.R. 986, the Protecting Americans with Preexisting Conditions Act of 2019, which would require the Administration to rescind its Section 1332 State Relief and Empowerment Waivers Guidance, released on October 22, 2018 (1332 guidance). The guidance would allow states to let individuals use advanced premium tax credits to purchase non-compliant short-term, limited duration insurance plans-which could further draw younger, healthier people out of the risk pool for comprehensive insurance and drive up premiums for those who need comprehensive coverage, such as individuals with neuromuscular conditions. Also advocated for the passage of H.R. 1010, legislation to provide that the rule entitled Short-Term, Limited Duration Insurance shall have no force or effect. Advocated maintaining strong incentives for rare disease drug development included within the Orphan Drug Act (PL 97-414) Advocated for the continuance of the Rare Pediatric Disease Priority Review Voucher Program within the context of the Creating Hope Reauthorization Act (H.R.4439)
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Natl Institutes of Health (NIH), Office of Management & Budget (OMB), SENATE, Transportation, Dept of (DOT)
Advocated for access to air travel for individuals with neuromuscular conditions by advocating for ongoing implementation of the Air Carrier Access Act (ACAA), the Federal Aviation Administration Reauthorization Act of 2017, and the FAA Reauthorization Act of 2018.
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Cited opposition to the expansion of Section 1115 demonstration waivers that would create substantial barriers to care for patients and families who enroll in Medicaid. Advocated in opposition to proposed action on the part of the Office of Management and Budget to amend the federal poverty measure in a manner that may impact the ability of individuals with neuromuscular disease and their caregivers to access necessary safety-net supports such as Medicaid.
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention.
Filing targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), HOUSE OF REPRESENTATIVES, Natl Institutes of Health (NIH), Office of Management & Budget (OMB), SENATE, Transportation, Dept of (DOT)
Filing targets: Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Natl Institutes of Health (NIH), SENATE, Transportation, Dept of (DOT)
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, insurance coverage, and access to care. Health care reform including H.R. 750 - Ensuring Access to Quality Complex Rehabilitation Technology Act of 2017; S. 379/H.R. 1171 - ALS Disability Insurance Access Act. Newborn screening including the planned introduction of the reauthorization of the Newborn Screening Saves Lives Act.
Filing targets: Executive Office of the President (EOP), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Natl Institutes of Health (NIH), SENATE, Transportation, Dept of (DOT)
Implementation of the Air Carrier Access Act (ACAA); S. 1405 - the Federal Aviation Administration Reauthorization Act of 2017; and H.R. 4 - FAA Reauthorization Act of 2018
Filing targets: Executive Office of the President (EOP), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Natl Institutes of Health (NIH), SENATE, Transportation, Dept of (DOT)