ALS Disability Insurance Access Act of 2019

H.R. 4386 and S. 2496, Stop the Wait Act (generally, no specific provisions). S.578 and H.R. 1407, ALS Disability Insurance Access Act of 2019 (generally, no specific provisions).

Client expense: $50,000 · Firm income: Not reported

Government targets: HOUSE OF REPRESENTATIVES, Labor, Dept of (DOL), Office of Personnel Management (OPM), SENATE, Small Business Administration (SBA), Social Security Administration (SSA), Treasury, Dept of, Veterans Affairs, Dept of (VA)

ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance. The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (S. 2741/ H.R. 4932) would expand access to telemedicine and telehealth for people with ALS through a legal and regulatory environment where providers are permitted to deliver safe, high quality care using telehealth and telemedicine regardless of care delivery location or technological method. Additionally, all changes made to expand access to telehealth during the COVID-19 public health emergency should be permanently extended. Promising Pathway Act (H.R. 7269/ S. 3872) to establish a new time-limited provisional approval path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved. Accelerating Critical Therapies for ALS Act (H.R. 7071) reintroduced as H.R. 8662/ S. 4867 to create 1) a new framework for delivering experimental therapies to people with ALS; 2) a new research grant program at the FDA for rare neurodegenerative diseases, and; 3) a new Collaborative for Rare Neurodegenerative Diseases at the Department of Health and Human Services (HHS) to coordinate federal efforts on developing and approving effective treatments and cures.

Client expense: $23,681 · Firm income: Not reported

Government targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, SENATE

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.

Client expense: $100,000 · Firm income: Not reported

Government targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)

Matters affecting access to and pricing of pharmaceuticals; matters affecting the Orphan Drug Act and therapies for rare diseases; legislation and regulatory activity relating to importation of prescription drugs, including S. 61 and H.R. 478, Safe and Affordable Drugs from Canada Act of 2019; S. 97 and H.R. 447, Affordable and Safe Prescription Drug Importation Act; S. 2543, Prescription Drug Pricing Reduction Act (PDPRA) of 2019 and H.R. 3; Lower Drug Costs Now Act of 2019; Policies impacting the U.S. response to the COVID-19 pandemic including H.R. 604, the Coronavirus Preparedness and Response Supplemental Appropriations Act, Public Law No. 116-123; H.R. 6201, Families First Coronavirus Response Act, Public Law No. 116-127; H.R. 748, the Coronavirus Aid, Relief, and Economic Security Act (CARES Act), Public Law No. 116-136; and H.R. 6800, the Health and Economic Recovery Omnibus Emergency Solutions Act (HEROES Act"). Education regarding Executive Orders impacting drug pricing including Medicare rebate reform, the 340B drug discount program, Buy America requirements, drug importation, and imposition of most favored nation pricing on drugs under Medicare Parts B and D. H.R. 1407/S.578, ALS Disability Insurance Access Act; and H.R. 7071, Accelerate Access to Critical Therapies for ALS Act.

Client expense: Not reported · Firm income: $30,000

H.R. 4386 and S. 2496, Stop the Wait Act (generally, no specific provisions). S.578 and H.R. 1407, ALS Disability Insurance Access Act of 2019 (generally, no specific provisions).

Client expense: $50,000 · Firm income: Not reported

Government targets: HOUSE OF REPRESENTATIVES, SENATE, Social Security Administration (SSA), Treasury, Dept of, Veterans Affairs, Dept of (VA)

ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance. The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (S. 2741/ H.R. 4932) would expand access to telemedicine and telehealth for people with ALS through a legal and regulatory environment where providers are permitted to deliver safe, high quality care using telehealth and telemedicine regardless of care delivery location or technological method. Additionally, all changes made to expand access to telehealth during the COVID-19 public health emergency should be permanently extended. Promising Pathway Act (H.R. 7269/ S. 3872) to establish a new time-limited provisional approval path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved. Accelerating Critical Therapies for ALS Act (H.R. 7071) to establish a grant program to provide access to experimental drugs to people with ALS and other rapidly progressing neurological diseases for which effective therapies do not currently exist and create a Center of Excellence for Neurodegenerative Diseases at the FDA to speed the development and approval of therapies for neurodegenerative diseases.

Client expense: $24,945 · Firm income: Not reported

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.

Client expense: $100,000 · Firm income: Not reported

Government targets: Centers For Medicare and Medicaid Services (CMS), Federal Aviation Administration (FAA), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, SENATE, Transportation, Dept of (DOT)

H.R. 4386 and S. 2496, Stop the Wait Act (generally, no specific provisions). S.578 and H.R. 1407, ALS Disability Insurance Access Act of 2019 (generally, no specific provisions).

Client expense: $50,000 · Firm income: Not reported

Government targets: HOUSE OF REPRESENTATIVES, SENATE, Social Security Administration (SSA), Treasury, Dept of, Veterans Affairs, Dept of (VA)

ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.

Client expense: $23,572 · Firm income: Not reported

Government targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, SENATE

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).

Client expense: $100,000 · Firm income: Not reported

ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.

Client expense: $32,124 · Firm income: Not reported

Government targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, SENATE

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.

Client expense: $100,000 · Firm income: Not reported

Government 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)

ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.

Client expense: $24,746 · Firm income: Not reported

Government targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, SENATE

ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.

Client expense: $25,845 · Firm income: Not reported

Government targets: Centers For Medicare and Medicaid Services (CMS), HOUSE OF REPRESENTATIVES, SENATE

Reintroduced ALS Disability Insurance Access Act (S.578/H.R.1407) for the 116th Congress to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance. Supported legislation (H.R.1010) to provide that the rule entitled "Short Term, Limited Duration Insurance" shall have no force or effect. Originally intended as temporary bridge or gap plans, short-term limited-duration health insurance policies have lower premiums than other plans on the market because they are exempt from many of the key requirements (including protections for pre-existing conditions and do not have to provide ACA-compliant Essential Health Benefits) that provide comprehensive coverage and protect consumers from high out-of-pocket costs.

Client expense: $23,371 · Firm income: Not reported

Government targets: HOUSE OF REPRESENTATIVES, SENATE