The Sickle Cell Disease Association of America Inc. urges the U.S. Department of Health and Human Services (HHS) and its Health Resources and Services Administration (HRSA) to issue the funding opportunity for the Sickle Cell Disease Newborn Screening Follow-Up Program to ensure the next five-year grant cycle, which is set to start Sept. 1, proceeds without delay.
The Follow-Up Program, which has been funded by Congress since 2002, is the only federal grant program that provides funding to sickle cell disease community-based organizations (member organizations). The House of Representatives fiscal year 2027 appropriations language, just released on June 8, includes $7 million again for this program, but HHS has yet to issue a new notice of funding opportunity, causing concern in the sickle cell disease community that this grant may no longer continue.
The funding allows the Follow-Up Program to provide grants to 25 sickle cell disease member organizations across 22 states, including states that have the highest prevalence of sickle cell disease, such as Florida, Texas, Georgia and New York. member organizations use the grant dollars to provide critical support services that directly impact sickle cell disease warriors.
On May 28, Reps. Troy Carter (D-LA) and Alma Adams (D-NC) were joined by 25 other members of Congress in sending a letter to Robert F. Kennedy Jr., secretary of HHS, and Thomas Engels, administrator of HRSA, asking that they quickly issue the next funding opportunity for the Follow-Up Program. The Sickle Cell Disease Association of America Inc. worked closely with Carter and Adams on this letter. Advocates asked members of Congress to join the letter during the Sickle Cell Disease Association of America’s May Hill Day.
Dr. Crawford Strunk, vice chief medical officer of the Sickle Cell Disease Association of America Inc.:
“Without this program, many sickle cell disease member organizations would be unable to support their mission of providing counseling, education and support services that are essential to a population with limited resources and suboptimal access to care. Through this program, sickle cell disease member organizations connect families affected by sickle cell disease with appropriate services as well as timely interventions such as penicillin prophylaxis, vaccinations and other vital treatments. We strongly urge HHS to release the funding notice for the HRSA Sickle Cell Disease Newborn Screening Follow-up Program.”
Tabatha McGee, CEO of the Sickle Cell Foundation of George Inc., which has received funding from the Follow-up Program since 2015:
“The funding has allowed us to establish and build a robust community health worker (CHW) program. CHWs provide care and resource coordination services in over 91 counties across the state of Georgia, providing 3,011 units of service between 2018 and 2023. In 2025, CHWs provided care and resource coordination services to 684 individuals with sickle cell disease. Three hundred and thirty were either placed or maintained in routine medical care. This translates to an approximate cost savings of $526,680 in reducing the unnecessary use of emergency departments for care by increasing the use of routine care.”
Dr. Carolyn Rowley, executive director of Cayenne Wellness Center, which has received funding from the Follow-up Program since 2015:
“This grant funding allows us to provide critical, wraparound support services for individuals and families affected by sickle cell disease, including transportation assistance, childcare and respite care, and the support of six community health workers who play a vital role in care coordination, education and patient advocacy. Over 1,200 sickle cell warriors are directly impacted by this grant funding each year. In 2024 alone, we provided more than 2,400 care-coordinated services through our programs. These supports have made a profound difference in health outcomes and quality of life for individuals living with sickle cell disease. Losing this funding would risk reversing that progress and creating barriers to life-sustaining care.”
Dr. Wanda Whitten-Shurney, CEO and medical director of the Sickle Cell Disease Association of America Michigan Chapter Inc., which has received funding from the Follow-up Program since 2015:
“This grant has allowed us to provide essential care coordination to help to ensure that our warriors and caregivers can navigate the healthcare system which includes education referrals to hematologists, primary care providers and subspecialists. The grant pays 20% of the salaries of our CHWs who have been able to support over 800 patients.”
The Sickle Cell Disease Association of America Inc. recognizes that the grant opportunity for HRSA’s Sickle Cell Disease Treatment Demonstration Program was released on Friday, June 5. This program funds sickle cell disease treatment centers and works in tandem with the Follow-Up Program. The published funding opportunity, however, does not mention the Follow-Up Program.