Tag Archives: SCDAA Statement

SCDAA Urges Renewal of Critical Sickle Cell Program

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.

MARAC Statement on Pociredir

June 2026 – The Sickle Cell Disease Association of America, Inc. (SCDAA) Medical and Research Advisory Committee (MARAC) is saddened to hear the news that Fulcrum Therapeutics is discontinuing development of its pociredir program for the treatment of sickle cell disease.

Pociredir is an investigational oral therapy that was hoped would increase fetal hemoglobin. The U.S. Food and Drug Administration (FDA) expressed safety concerns linked to drugs targeting the protein complex which pociredir targeted.

Though progress has been made in the treatment of sickle cell disease, there is still a limited number of therapies available for individuals suffering from sickle cell disease. MARAC encourages the pharmaceutical industry and the FDA to work with the sickle cell community to continue to look for therapies that not only address the clinical outcomes that are often evaluated in sickle cell studies, but also explore outcome measures and endpoints that address patient-reported outcomes that impact quality of life. MARAC looks forward to continuing to partner with the pharmaceutical industry, government and the sickle cell community to find treatments for the sickle cell population.

Download this statement.

In Remembrance of KiKi Shepard

The Sickle Cell Disease Association of America, Inc. (SCDAA) mourns the loss of KiKi Shepard, an actress and dedicated sickle cell advocate, who passed away recently at the age of 74. Many knew KiKi as a longtime co-host of the “Showtime at the Apollo” variety show, but she was also the founder of sickle cell nonprofit The KIS Foundation and worked closely with many individuals and organizations in the SCD community, including SCDAA.

In a letter on her website, KiKi says that her advocacy journey began “when I saw the effect on the family of a personal friend whose brother suffered and died as a result of this terrible disease. The strong desire to combat my shared grief and sense of helplessness led me to offer my services to the Sickle Cell Disease Association of America, Inc. Through this national organization, I was introduced to SCD families across America and was able to interact with many patients whose bodies and minds are ravaged by this disease.”

KiKi worked closely with SCDAA until she founded her own organization in the mid-2000s. She served as the moderator of the Lonzie Lee Jones Symposium at the 38th Annual National Convention in 2010 and remained active in the SCD advocacy space throughout her life.

According to a statement released by her family, “KiKi believed that compassion, community and education could change lives. Her voice uplifted countless individuals who often felt unseen, and her work created lasting pathways for hope, resources and understanding for those living with this disease.”

Thank you, KiKi, for your commitment to our cause. We send our sincere condolences to her friends and family for their loss.

SCDAA Response to National Academies Release of Final Report on Sickle Cell Disease and Social Security Disability Evaluations

On December 9, 2025, the National Academies of Sciences, Engineering, and Medicine (NASEM), released the second and final Sickle Cell Disease in Social Security Disability Evaluations 2025 Report. This report was completed at the request of the Social Security Administration, which tasked NASEM with reviewing the latest published research and science and producing a report on best practices and community experiences in the management and treatment of sickle cell disease. NASEM also released an interim report in June 2025.  

The Sickle Cell Disease Association of America Inc. (SCDAA), and its Medical and Research Advisory Committee (MARAC) strongly support the report’s conclusions and are eager to work with the Social Security Administration to implement appropriate and needed changes to the current Social Security disability criteria for sickle cell disease. 

This final report recognizes the broad variation in sickle cell disease and its complications as well as approaches to both acute and chronic pain management, highlighting that, for a number of reasons, pain is often managed at home or in a variety of outpatient care settings. The report’s important conclusions include: 

“There is an opportunity to improve the accuracy in the determination of disability by considering the broad variability in sickle cell disease complications and approaches to both acute and chronic pain management in a variety of settings…” 

“The frequency of sickle cell disease treatment encounters for acute complications, such as pain crises, in the emergency department and inpatient settings … is too restrictive a measure of disease severity. Growing use of alternative models of care has enabled similar levels of care in outpatient or home settings.” 

Additionally, the NASEM Report provides “overarching conclusions” related to the: 

  • full spectrum of pain and the variation in how it is experienced individuals living with SCD
  • lack of access to coordinated care
  • significant issues in transitioning from adolescence to adulthood in care, treatment and disability eligibility

The NASEM conclusions provide SCDAA and MARAC with justification to advocate for changes to the current disability criteria for sickle cell disease. 

Individuals with sickle cell disease face barriers when applying for Social Security disability and are often denied because of the overly restrictive criteria. The findings and conclusions made by this important report will enable the sickle cell disease community to initiate much needed changes.   

Sickle cell disease is a rare inherited blood disease causing red blood cells to take a sickle shape, which leads to blockages that prevent blood from reaching parts of the body. As a result, people with sickle cell complications can experience anemia, jaundice, gallstones, stroke, chronic pain, organ damage and premature death. No universal cure exists. 

Sickle Cell Disease Association of America Inc. advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 55 member organizations support sickle cell research, public and professional health education and patient and community services. (www.sicklecelldisease.org) 

MARAC Statement: Pfizer Inclacumab Announcement

August 15, 2025 – In a statement issued today, Pfizer announced the results of their Phase 3 THRIVE-131 study evaluating inclacumab. Although inclacumab was generally well tolerated in THRIVE-131, the study results concluded that inclacumab “did not meet its primary endpoint of significant reduction in the rate of vaso-occlusive crises (VOCs) in participants receiving inclacumab versus placebo every 12 weeks.” The Medical and Research Advisory Committee (MARAC) of the Sickle Cell Disease Association of America, Inc. (SCDAA) would like to express its disappointment in hearing this news. While we recognize that not all therapies will be approved, this report does present a setback to the sickle cell disease community. It underscores the need for further research and clinical trials to find a universal cure for this rare disease.

Sickle cell disease (SCD) is a rare condition that affects over 100,000 Americans and millions across the world. Progress has been made in the treatment of the disease since the approval of hydroxyurea 1997 but it has been slow and far and few between. In addition to hydroxyurea, only two other medications are currently available to treat sickle cell patients: L- glutamine and crizanlizumab. These disease modifying therapies have successfully addressed such major complications as acute pain crisis and acute chest syndrome, among others. Still individuals continue to report issues such as fatigue, chronic pain and other symptoms that result in poor quality of life. Recently approved cell and gene therapies are available and are potentially curative but are costly and require a significant time commitment for the transplant procedure.

MARAC recognizes that while the Pfizer study did not achieve the anticipated outcomes, we applaud those individuals who participated in this and other in clinical trials. Had the therapy achieved its primary clinical trial endpoint, it would have been promising. MARAC encourages the pharmaceutical industry and the Food and Drug Administration (FDA) to work with the sickle cell community to continue to search for therapies that not only address the clinical outcomes often evaluated in sickle cell studies but also explore outcome measures and endpoints that address patient-reported outcomes that impact quality of life.

SCDAA has also joined with a community of sickle cell disease advocacy organizations with this response.

SCDAA’s CHW Training Program Accredited by Maryland

Exciting News: the Maryland Department of Health has officially accredited SCDAA’s Community Health Worker Training! This accolade will allow our program to have an even bigger impact in the state. Students who have successfully completed our training program can now apply for CHW certification with the Maryland Department of Health. Congrats to our CHW team on this accomplishment!

P.O.W.E.R. CHW Award Nominations are Now Open!

Each year during the SCDAA Annual National Convention, we recognize the amazing work performed by community health workers (CHWs) with the SCDAA P.O.W.E.R. CHW Award. The CHW Award honors exemplary performance by individuals who have been identified by their supervisors and peers as having consistently excelled in their positions and demonstrated integrity and a strong commitment to the sickle cell disease (SCD) community and values of the community health worker profession.

If you would like to nominate a CHW for the award, please fill out the below document and submit to the SCDAA Senior Community Impact & Engagement Manager Kevin Amado at kamado@sicklecelldisease.org. The deadline for submission is Friday, August 29.

CMS Expands Access to the CGT Access Model

On July 15, 2025, the Centers for Medicare & Medicaid Services (CMS) announced expansions to the Cell and Gene Therapy (CGT) Access Model.

“The Sickle Cell Disease Association of America, Inc., is excited by the news that CMS has reached agreements with drug manufacturers to provide gene therapies to treat sickle cell disease to Medicaid recipients and that 33 states, plus the District of Columbia and Puerto Rico, have joined a program that ties Medicaid payments to patient outcomes,” says Dr. Edward Donnell Ivy, SCDAA chief medical officer. “For a long time, the only disease-modifying therapy for sickle cell disease was hydroxyurea, which doesn’t work for many sickle cell patients and leaves the community with limited options for care. The new gene therapies that were approved by the FDA in 2023 will allow individuals the opportunity for transformative therapy with potential cure. However, access to this new therapy might be limited by the cost of the treatment, so it is important for CMS and other stakeholders to get involved in ensuring access to this therapy, particularly since it has been demonstrated that a large portion of the sickle cell population relies on Medicaid for access to care.”

To learn more, click here to read the CMS statement.