Washington DC – House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-Wash.) and Health Subcommittee Chair Brett Guthrie (R-Ky.) today announced “Legislative Proposals to Support Rare Disease Patients.'' announced the holding of a legislative hearing titled.
“Energy and Trade Republicans have consistently and proudly defended the value and dignity of all life. People living with rare diseases are no exception and deserve every opportunity to live a fulfilling life. Similar to our recent efforts to ban the discriminatory practice of quality-adjusted life years, we will consider legislative proposals that will further support rare disease patients and help them maintain access to life-saving treatments. , I am proud to continue building on the committee's previous work.” Chairman Rogers and Chairman Guthrie said. “By supporting research and fostering innovation, we can continue to help discover treatments and cures that bring hope to patients in need.”
Health Hearing Subcommittee entitled “Legislative Proposals to Support Rare Disease Patients.''
what: Congressional hearing to discuss solutions to support patients living with rare diseases.
date: Thursday, February 29, 2024
time: 10 am
position: 2123 Rayburn House Office Building
witness: Witnesses will be announced and available by invitation only.
Laws discussed:
- HR 1092the Better Empowerment (Benefits) Act to Strengthen the Framework and Improve Treatment (Representatives Matsui and Wenstrup)
- HR 3433the Giving Children a Chance Act (Representatives McCall and Eshoo)
- HR4758the Accelerating Access to Care for Children Act (Rep. Trahan and Rep. Miller-Meeks).
- HR5539Hope and New (ORPHAN) Therapies to Optimize Research Progress (Representatives Joyce and Nickell)
- HR5547the Sustaining Investment in New Innovations (MINI) Act (Rep. Nickel and Rep. Joyce)
- HR5663ALS Better Care Act (Rep. Schakowsky, Quigley, and Fitzpatrick)
- HR6020the Honoring Our Living Givers Act (Representatives Obernolte and DelBene).
- HR6094(PROTECT) Providing realistic opportunities to receive equal and equal treatment for rare acts (Representative Matsui, Representative Dunn)
- HR6465the Maintaining Lifesaving Access to Specialized Medical Care in America (Plasma) Act (Rep. Hudson and Rep. Davis).
- HR6664Innovations in Pediatric Drug Law (Rep. Eshoo and Rep. McCaul)
- HR6705Effective Screening and Testing for Tuberculosis Act (Rep. Moolenaar and Rep. Dingell).
- HR 7188Shandra Eisengah Human Cell and Tissue Product Safety Act (Rep. Moolenaar and Dingell)
- HR 7248FDA Modernization Act 3.0 (Rep. Carter and Rep. Barragan)
- HR 7383Retaining Access and Restoring Exclusivity (RARE) Act (Representatives Matsui and Bilirakis)
- HR 7384creating the Hope Reauthorization Act of 2024 (Representatives McCall and Eshoo).
- human resources___Antimicrobial Resistance Research and Evaluation Act (Representative Griffith)
- human resources___Patient Access Act (Rep. Guthrie)
- human resources___Sickle Cell Comprehensive Care Act (Rep. Burgess)
This notice is based on the instructions of the Chairman. The hearing will be open to the public and media and will be livestreamed online. https://energycommerce.house.gov/. If you have any questions regarding the hearing, please contact her Emma Schultheis on Committee staff. Emma.Schultheis@mail.house.gov. If you have any media-related questions, please contact Christopher Krepich. Christopher.Krepich@mail.house.gov.
