Subcommittee on Health Chair Brett Guthrie (R-KY) delivered the following opening statement at today’s Health Subcommittee legislative hearing titled “Examining Proposals that Provide Access to Care for Patients and Support Research for Rare Diseases.”
PROMOTING ACCESS TO CARE & IMPROVING OUTCOMES
“Today we are here to discuss legislation to promote access to care and improve health outcomes for Americans.
“We’ll consider bills to help support innovation for therapies and live-saving cures for rare diseases, which effect more than 30 million Americans.
“That is why we are considering H.R. 3391, the Gabriella Miller Kids First Research Act 2.0, which would reauthorize the National Institutes of Health’s (NIH) Gabriella Miller Kids First Pediatric Research Program.
“We’re also considering H.R. 3226, the PREEMIE Reauthorization Act of 2023, led by Ranking Member Eshoo and Representatives Miller-Meeks, Kelly, Kiggans, Blunt Rochester, and Burgess.
“We also have more work to do to protect the long-term health and well-being of expecting and new moms.
“We will continue to build off the work this subcommittee has done over the past several years to address maternal mortality.
“H.R. 3838, the Preventing Maternal Deaths Reauthorization Act, will continue the work done by the CDC and HRSA to provide access to resources for women experiencing risky pregnancies and develop best practices to treat at-risk moms.
“We are also considering H.R. 3821, the Firefighter Cancer Registry Reauthorization Act. Our first responders experience adverse health outcomes often resulting from the selfless and brave work they do to keep us and our loved ones safe.”
IMPROVING ACCESS TO THERAPIES FOR RARE DISEASES
“We’re also examining legislation to advance our knowledge of rare diseases and promote access to therapies to treat these diseases, such as sickle cell and Parkinson’s Disease.
“As a step forward to address these issues, today we are examining both H.R. 3884, the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act, and H.R. 2365, the National Plan to End Parkinson’s Act. I would like to thank Representatives Burgess and Bilirakis for their leadership on these bills.
“Fortunately, we are already seeing progress and breakthroughs in treatments for these and a variety of other rare diseases.
“That is why I am proud to be leading on the MVP Act with Ranking Member Eshoo that already passed this committee, which would provide further access to life-changing treatments to patients living with devastating and currently incurable, diseases.
“Lastly, we are considering H.R. 3887, the Children’s Hospital GME Support Reauthorization Act of 2023.
“This program provides funding to children’s hospitals to help train resident physicians and dentists.
“It is critical for us to reauthorize the program before the end of the fiscal year with necessary policy changes to keep kids safe from experimental procedures.
“In closing, I am proud of the many bipartisan bills before us that will improve access to care and drive innovation.
“Patients and their families will be better off because of the work we are doing today.”
Original source can be found here.