Hearing on "Legislative Proposals to Support Patients with Rare Diseases"
Date:
The Subcommittee on Health of the Committee on Energy and Commerce held a hearing on Thursday, February 29, 2024, at 10 a.m. in the John D. Dingell Hearing Room, 2123 Rayburn House Office Building. The hearing is entitled “Legislative Proposals to Support Patients with Rare Diseases.”
Key Documents
Opening Statement from Ranking Member Pallone as prepared for delivery
Opening Statement from Subcommittee on Health Ranking Member Eshoo as prepared for delivery
Livestream
Witnesses
Dr. Jeromie Ballreich, PhD, MHS
Associate Research Professor
Johns Hopkins Bloomberg School of Health
Dr. Alexander Bassuk, MD, PhD
Physician-in-Chief, University of Iowa Stead Family Children’s Hospital
Chair and Professor, Stead Family Department of Pediatrics
Dr. Alice Chen, PhD
Senior Fellow, USC Schaeffer Center for Health Policy and Economics
Associate Professor and Vice Dean for Research, USC Sol Price School of Public Policy
Khrystal Davis, JD
Founding President
Texas Rare Alliance
Dr. Terence Flotte, MD
Provost and Dean of UMass Chan Medical School
Vice President of American Society of Gene and Cell Therapy (ASGCT)
Dr. Aaron Kesselheim, MD, JD, MPH
Professor of Medicine, Harvard Medical School
Director, Program On Regulation, Therapeutics, And Law (PORTAL) at Brigham and Women’s Hospital
Legislation
- H.R. 1092, the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act
- H.R. 3433, the Give Kids a Chance Act
- H.R. 4758, the Accelerating Kids Access to Care Act
- H.R. 5539, the Optimizing Research Progress Hope And New (ORPHAN) Cures Act
- H.R. 5547, the Maintaining Investments in New Innovation (MINI) Act
- H.R. 5663, the ALS Better Care Act
- H.R. 6020, the Honor Our Living Donors Act
- H.R. 6094, the Providing Realistic Opportunity To Equal and Comparable Treatment for (PROTECT) Rare Act
- H.R. 6465, the Preserving Life-saving Access to Specialty Medicines in America (PLASMA) Act
- H.R. 6664, the Innovation in Pediatric Drugs Act
- H.R. 6705, the Effective Screening and Testing for Tuberculosis Act
- H.R. 7188, the Shandra Eisenga Human Cell and Tissue Product Safety Act
- H.R. 7248, the FDA Modernization Act 3.0
- H.R. 7383, the Retaining Access and Restoring Exclusivity (RARE) Act
- H.R. 7384,the Creating Hope Reauthorization Act of 2024
- H.R. ____,the Antimicrobial Resistance Research Assessment Act
- H.R. ____, the Patient Access Act
- H.R. ____, the Sickle Cell Disease Comprehensive Care Act
Subcommittees
Issues:Health