Hearing to Advocate for Americans with Rare and Progressive Diseases to Have Access to Life-saving Treatments
WHAT: Senator Robert P. Casey, JR (D-PA) and Senator Mike Braun (R-IN) and will host a U.S. Senate Special Committee on Aging hearing, titled Unlocking Hope: Access to Therapies for People with Rare, Progressive, and Serious Diseases. A press event, hosted by Senator Braun, Senator Kristen Gillibrand (D-NY), Representative Mike Gallagher (R-WI), and Representative Mike Quigley (D-IL), will precede the hearing. Both events will highlight the barriers to treatment faced by Americans with rare and progressive diseases. Anish Bhatnagar, M.D., Chief Executive Officer of Soleno Therapeutics will act as a witness in the Senate hearing and share the regulatory challenges faced by the Prader-Willi Syndrome community, and the broader rare disease community.
The hearing and the press event are open to the media. The hearing will feature testimony from expert witnesses advocating for Congress to ensure patient access to therapies in a timely manner. The press event will provide a platform for patient advocates and members of the community to communicate the importance of earlier access to promising therapies.
WHEN:
- Thursday, October 26
- Press event: 9:00-9:40 a.m. ET
- Senate hearing: 10:00 a.m. ET
WHERE:
- 106 Dirksen Senate Office Building, Washington, D.C.
- Click here for a live stream
WHO:
Hearing Witnesses:
- Brian Wallach, JD, Co-Founder, I AM ALS, Kenilworth, IL
- Maureen Bell Galactosemia Patient and Advocate, Chalfont, PA
- Margaret Plews-Ogan, MD, Brodie Professor of Medicine, University of Virginia, Charlottesville, VA
- Anish Bhatnagar, MD, Chief Executive Officer, Soleno Therapeutics, Redwood City, CA
- Holly Fernandez Lynch, JD, MBe, Assistant Professor of Medical Ethics and Health Policy, University of Pennsylvania
- Keith Desserich, Chairman/Co-Founder, The Cure Starts Now Foundation and President, Pediatric Brain Tumor Consortium Foundation, Cincinnati, OH
Contact: Scott Bickel (Scott_Bickel@aging.senate.gov) or Anna Stallmann (anna@annacomms.com)
Please join members of Congress on October 26th, 2023 at Capitol Hill to advocate for meaningful change, including the passage of the Promising Pathway Act.