MATSUI TO CO-CHAIR RARE DISEASE CAUCUS
WASHINGTON, D.C. – Today, Congresswoman Doris Matsui (D-CA),announced that she will co-chair the Rare Disease Congressional Caucus in the 118th Congress.
The Rare Disease Congressional Caucus is a bipartisan, bicameral caucus, providing a platform to engage on policy issues impacting the rare disease community. Matsui will take over for the retiring Rep. G.K. Butterfield (D-NC) and join current co-chairs Rep. Gus Bilirakis (R-FL) and Senators Roger Wicker (R-MS) and Amy Klobuchar (D-MN).
“Access to the best medical care is crucial for patients living with rare and ultra-rare diseases, and that is why I have long made it a priority to work on policies that will advance the science of rare disease therapies and expand access to care,” said Congresswoman Matsui. “For the millions of Americans with rare diseases, we can and must do better. That’s why I am proud to co-chair the Rare Disease Congressional Caucus and continue to advocate for our community of rare disease patients and their families. I thank Rep. Butterfield for his years of advocacy and service, and I am ready to get to work on these important issues in the new Congress.”
Congresswoman Matsui has been a longtime advocate for the rare disease community. She is the author of the TRANSPLANT Act, which renews the federal programs that ensure continued access to lifesaving therapies for those who suffer from blood cancer and blood disorders. The bill was signed into law by President Biden in May 2021. Matsui also leads the BENEFIT Act, which would provide patients and patient advocates with the ability to play a larger role in the Food and Drug Administration’s (FDA) benefit-risk framework for drug approval. Matsui has also authored the Access to Rare Indications Act, which would support patients with rare and ultra-rare diseases in getting evidence-based, medically necessary care covered by their health insurance.
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