Press Releases

WASHINGTON, D.C. – In honor of Rare Disease Month, which is recognized each February, Representative John James (MI-10) introduced the Sickle Cell Disease Research Reauthorization Act. The bill is being co-led by Representatives Jen Kiggans (VA-02), Troy A. Carter, Sr. (LA-02), Danny Davis (IL-07), Marc Veasey (TX-33). Senators Tim Scott (R-SC) and Cory Booker (D-NJ) are leading an identical bill in the Senate.

Sickle cell disease (SCD) is a blood disorder predominantly affecting African Americans, Latinos, and other minority groups. Individuals with SCD have a significantly lower life expectancy than the overall population. According to the Centers for Disease Control and Prevention, sickle cell affects approximately 100,000 individuals in the United States. Specifically, the bill reauthorizes the Sickle Cell Disease Treatment Demonstration Program, which was last reauthorized in 2018. The program provides research funding for prevention and treatment of SCD. 

“Sickle cell disease research is critical to treatment and prevention, and I’m firmly behind the Sickle Cell Disease Research Reauthorization Act. This disease has touched the lives of so many, especially in our Black and minority communities — including thousands in our state and nationwide. My military service taught me that smart, targeted action beats bureaucracy every time. This bill cuts through the noise, driving research—like game-changing gene therapies—and better data to empower families with real solutions. It’s about giving people the tools to fight back, not leaving them to fend for themselves," said Rep. James.

“As a healthcare provider, I am proud to join my colleagues in introducing legislation to reauthorize the Sickle Cell Disease Treatment Demonstration Program,” said Congresswoman Jen Kiggans. “Today, roughly 100,000 Americans live with sickle cell disease. Reauthorizing this program is essential to ensuring these patients continue to have access to quality care.”

“For the past seven years, we have worked tirelessly to expand critical access to care for Americans battling sickle cell disease, and we cannot afford to lose momentum now,” said Representative Veasey, a member of the Energy and Commerce Health Subcommittee. “Reauthorizing the Sickle Cell Disease Treatment Demonstration Program builds on the progress we’ve made—training more clinicians, improving care coordination, and advancing research—so that Americans living with SCD, particularly those in historically underserved communities, receive the comprehensive, high-quality care they deserve."

“Sickle cell disease is a painful and often debilitating condition. I’m proud to be an original cosponsor of this bill, which marks a critical step toward ensuring that patients with this inherited blood disorder receive the comprehensive, coordinated care they urgently need. It’s past time that we prioritize the health and well-being of those impacted by sickle cell disease, especially Black Americans who are disproportionately affected,” said Congressman Troy A. Carter, Sr. (LA-02).

“I have watched loved ones and neighbors suffer from sickle cell disease, a disease that subjects people to debilitating pain and the high risk for infection, vision loss, stroke, and asthma” said Rep. Davis. “Comprehensive care is essential to managing the pain and reducing mortality.  This bipartisan legislation will help American SCD warriors access quality care while improving research, treatment, and awareness about Sickle Cell Disease.”

“Reauthorizing this program will allow us to expand access to research and treatment for rare blood diseases and reduce the number of people in already overwhelmed emergency rooms. I am glad to play a small role in easing the burden that SCD has on too many individuals and their families,” said Senator Scott. “This legislation will help ensure continued innovation and advancement of life-changing SCD care.” 

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