Reps. Carter, Adams Lead Letter Urging Sickle Cell Funding

WASHINGTON, D.C. - U.S. Representatives Troy A. Carter, Sr. (D-LA) and Alma Adams (D-NC) recently sent a letter to U.S. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. and Health Resources & Services Administration Administrator Thomas J. Engels urging the Health Resources and Services Administration's (HRSA) not to delay critical funding for the Maternal and Child Health Bureau's Sickle Cell Disease (SCD) Newborn Screening Follow-Up Program (Follow-Up Program). The members want to ensure the important services provided by sickle cell disease community-based organizations (CBOs) do not lapse. Any delay in awarding grants will impact the continuation of the critical services provided by the CBOs that participate in the program.

"While newborn screening for sickle cell disease (SCD) occurs in every state, many individuals are lost to follow-up care or face barriers to access high-quality care throughout their lifetime," the Members wrote. "HRSA's Sickle Cell Disease Newborn Screening Follow-Up Program works in tandem with HRSA's Sickle Cell Disease Treatment Demonstration Program (SCD TDP) to help address these access issues. The Follow-Up Program focuses on providing supportive services to individuals living with sickle cell disease and their families while the SCD TDP focuses on the clinical aspect of care for individuals with SCD and bolstering provider education related to SCD."

The current five-year grant cycle for this program ends August 31, 2026, but HRSA has yet to issue a new Notice of Funding Opportunity for the next grant cycle. Without an announcement of future funding, it is unclear if the SCD Follow-Up Program will be extended. Congress provided full funding for the program in 2026 at $7 million and there is active support for continued funding in 2027.

"Sickle cell disease doesn't wait, and neither can we. The 25 community-based organizations funded through HRSA's Follow-Up Program are lifelines for patients and families across this country - connecting them to care, to specialists, and to hope," said Rep. Carter. "Congress did its job by funding this program in 2026, and we stand ready to fight for continued funding in 2027. But right now, HHS must act. Every day without a new Notice of Funding Opportunity is a day these organizations are left in limbo, and every day they are in limbo, patients are at risk. I will not stop pushing until these grants are secured and the sickle cell community has the certainty it deserves."

"I watched my sister suffer and lose her life to sickle cell disease at just 26 years old. That loss is why I have spent my career in Congress fighting to ensure no family faces that same devastating struggle alone, without access to proper care," said Rep. Adams. "The 25 community-based organizations funded by the Follow-Up Program are the backbone of the sickle cell community, connecting patients with education and resources, linking families to specialists, arranging transportation to care, and providing financial support when families need it most. These organizations are not a luxury. They are the infrastructure that keeps patients alive. Every day this funding is delayed puts that infrastructure at risk of collapse. I am calling on HHS to issue a new Notice of Funding Opportunity for these grants immediately. We cannot allow politics or bureaucratic inaction to cost people their health, or their lives."

"The Sickle Cell Disease Association of America, Inc. (SCDAA) thanks Representatives Troy Carter and Alma Adams for taking the lead on urging the Administration to extend the grants for HRSA's Sickle Cell Disease Newborn Screening Follow Up Program. Since 2002, Congress has funded these grants to support sickle cell disease community-based organizations (CBOs). They are used to provide essential direct services, referrals, and education to those living with sickle cell disease," said Regina Hartfield, President and CEO of SCDAA. "CBOs are the first place a sickle cell warrior goes for help. CBOs-and the sickle cell community--cannot have this grant program lapse."

Additional lawmakers signing onto the effort include Reps. Pete Aguilar (D-CA), Sanford Bishop (D-GA), Suzan DelBene (D-WA), Shomari Figures (D-AL), Al Green (D-TX), Adelita Grijalva (D-AZ), Steven Horsford (D-NV), Glenn Ivey (D-MD), Jonathan Jackson (D-IL), Robin Kelly (D-OH), Summer Lee (D-PA), LaMonica McIver (D-NJ), Seth Moulton (D-MA), Kim Schrier (D-WA), Terri Sewell (D-AL), Emilia Sykes (D-OH), Shri Thanedar (D-MI), Rashida Tlaib (D-MI), Paul Tonko (D-NY), Marc Veasey (D-TX), and Nikema Williams (D-GA).

Read the full letter here.

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