NE Washington News

House Energy and Commerce Committee Chair Cathy McMorris Rodgers (R-WA) expressed her support for patients with rare diseases in her opening remarks at a Health Subcommittee legislative hearing. She highlighted the importance of legislation to promote innovation for individuals with rare diseases and ensure that all patients can benefit from advancements in the healthcare field. Rodgers emphasized the significance of Rare Disease Day, stating, "I'm glad we're gathered on Rare Disease Day to examine legislation to help move forward efforts to promote innovation for people with rare diseases and make sure all patients can benefit from all the exciting innovation that is happening."

Rodgers shared the story of Hunter Davis, a 12-year-old with Spinal Muscular Atrophy Type 1, to illustrate the impact of rare diseases on individuals and families. She pointed out that there are over 10,000 known rare diseases affecting an estimated 30 million Americans, like Hunter, with only about 500 of these diseases having FDA-approved treatments.

The Chair acknowledged the progress made in fostering innovation for rare disease treatments, citing the Orphan Drug Act as a significant milestone. Rodgers noted the increase in FDA approvals for orphan-designated drugs and biologics in recent years and emphasized the importance of ensuring regulatory clarity to facilitate the development of novel therapies and potential cures for patients.

In addition to fostering innovation, Rodgers highlighted the need to expand access to care for patients with rare diseases. She discussed the challenges faced by patients in accessing treatment options, particularly in cases where care is concentrated at specialized centers. Rodgers mentioned legislative proposals, such as Congressman Guthrie's Patient Access Act and Congresswoman Miller-Meeks's Accelerating Kids Access to Care Act, aimed at addressing these access barriers and reducing costs for patients seeking lifesaving care.

Addressing concerns related to the Inflation Reduction Act's drug pricing scheme, Rodgers emphasized the importance of prioritizing the needs of rare disease patients. She expressed hope for bipartisan collaboration in addressing the unintended consequences of the IRA's pricing scheme and highlighted the role of the committee in supporting innovation and healthcare access for families across the country.

As the committee continues its work on supporting patients with rare diseases, Rodgers emphasized the importance of bipartisan cooperation and expressed readiness to explore further legislative opportunities to enhance healthcare outcomes for individuals facing rare diseases.