Affirming the importance of the Orphan Drug Act, applauding its lifesaving contributions over its 35-year history, and recognizing the need to continue supporting research and development for rare diseases.
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Applauds the growth in research and development into new therapies for rare diseases and the resulting number of FDA-approved therapies for those living with rare diseases, and affirms the need to continue supporting such research and development. Recognizes that significant research and development efforts and related investments are needed to develop therapies to treat and cure thousands of rare diseases for which no treatment options are currently available.
These links require the bill number to appear in the filing's source-reported specific issue text. Client expenses and lobbying-firm income are separate disclosure fields.
Filing registrants (3)
2018 · fourth_quarter · Pharmacy
Pharmaceutical issues impacting patients with rare diseases. H.Res.1154/S.Res.690: Affirming the importance of the Orphan Drug Act, applauding its lifesaving contributions over its 35-year history, and recognizing the need to continue supporting research and development for rare diseases. Patient-focused drug development. Rare disease early development and the role of pre-investigational new drug application meetings. S.3519: MODERN Labeling Act.
Referred to the House Committee on Energy and Commerce.
Introduced in House
Congress.gov source codes: 1000, Intro-H
Bills with similar content found using semantic analysis.
Sources: Congress.gov
Client expense: $80,000 · Firm income: Not reported
Government targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Natl Institutes of Health (NIH), SENATE
2018 · fourth_quarter · Health Issues
Medicare Part D Affirming the importance of the Orphan Drug Act, applauding its lifesaving contributions over its 35-year history, and recognizing the need to continue supporting research and development for rare diseases; H.Res.1154 A resolution affirming the importance of the Orphan Drug Act, applauding the life-saving accomplishments of the Act during its 35-year history, and recognizing the need to continue support for research and development of new therapies for rare diseases; S.Res.690 Step therapy in Medicare Advantage plans Restoring the Patient's Voice Act of 2017; H.R.2077 Rare disease Advancement, Research, and Education Act of 2018; H.R.5115 National Institutes of Health funding Food and Drug Administration appropriations Orphan Drug Act Medical Nutrition Equity Act of 2017; H.R.2587, S.1194 Short-term, limited-duration health plans Association health plans Section 1115 waivers Section 1332 waivers Copay accumulator programs FY19 Labor, Health and Human Services, Education/Defense appropriations conference report; H.R.6157 Medicaid expansion Pediatric subspecialty loan repayment reauthorization Patient-focused drug development Human gene therapy for rare diseases Rare disease early development and the role of pre-investigational new drug application meetings International pricing index model for Medicare part B drugs Newborn Screening Saves Lives Act reauthorization Neurological Conditions Surveillance System funding MODERN Labeling Act of 2018; S.3519 ENROLL Act of 2018; H.R.7102
Client expense: Not reported · Firm income: Not reported
Government targets: Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA), HOUSE OF REPRESENTATIVES, Health & Human Services, Dept of (HHS), Natl Institutes of Health (NIH), SENATE
2018 · fourth_quarter · Health Issues
H.RES. 1154: AFFIRMING THE IMPORTANCE OF THE ORPHAN DRUG ACT, APPLAUDING ITS LIFESAVING CONTRIBUTIONS OVER ITS 35-YEAR HISTORY, AND RECOGNIZING THE NEED TO CONTINUE SUPPORTING RESEARCH AND DEVELOPMENT FOR RARE DISEASES; ALL PROVISIONS OF THE RESOLUTION GENERAL DISCUSSIONS REGARDING GENE THERAPY GENERAL DISCUSSIONS REGARDING PHENYLKETONURIA(PKU) EDUCATION AND OUTREACH GENERAL DISCUSSIONS REGARDING THE ORPHAN DRUG ACT GENERAL DISCUSSIONS REGARDING NEWBORN SCREENING GENERAL DISCUSSION REGARDING ADVANCE NOTICE OF PROPOSED RULE MAKING (ANPRM): INTERNATIONAL PRICING INDEX MODEL FOR MEDICARE PART B DRUGS GENERAL DISCUSSIONS REGARDING HEALTH EDUCATION
Client expense: $340,000 · Firm income: Not reported
Government targets: HOUSE OF REPRESENTATIVES, SENATE
2018 · fourth_quarter · Health Issues
Rare disease patient care, screening, and coverage issues in authorization and appropriations legislation, S 1151 Credit for Caring Act, SRes 690 and HRes1154, Orphan Drug Act anniversary
Client expense: $110,000 · Firm income: Not reported
Government targets: HOUSE OF REPRESENTATIVES, SENATE