Author Archives: Emma Day

Black History Month 2025: Dr. Angella Ferguson

Our first 2025 Black History Month #SCDHistoryHighlight features Dr. Angella D. Ferguson, a pediatrician and SCD pioneer who recently passed away at the age of 100.

Dr. Ferguson was born in 1925 and received her bachelor’s and medical degrees from Howard University. After graduation, she began work as a medical researcher at Howard University’s School of Medicine, where she aimed to gather data correlating the height and weight of children with age.

While completing this research, she discovered that a large number of African American children suffered from sickle cell disease, which, at the time, was a fairly unknown condition. She changed gears and committed her time to understanding how the disease presents itself in children. In doing so, she became one of the first researchers to dedicate her studies to sickle cell.

Dr. Ferguson’s research had lasting impacts on how sickle cell is diagnosed and treated. She developed a blood test to diagnose the disease in infants, and her test is the standard in most states to this day. Thanks to her research, we better understand which symptoms to look for in children and can start treating sickle cell earlier.

Dr. Ferguson passed away on January 6, 2026. We send our condolences to her family and friends and extend our deepest appreciation for her steadfast commitment to our community.

Congress Passes Government Funding Bill with Big Wins for the SCD Community

Feb. 3, 2025 – Today, the House of Representatives passed a package of bills providing funding for government programs for fiscal year (FY) 2026, which runs through September 30, 2026. The President is expected to quickly sign the bill into law. All three federal sickle cell disease programs were maintained with the same funding levels as years prior. This includes:

    • $8.205 million for the Health Resources and Services Administration’s (HRSA) Sickle Cell Disease Treatment Demonstration Program
    • $7 million for HRSA’s Sickle Cell Disease Newborn Screening Follow Up Program
    • $6 million for the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection Program

The package also included other SCDAA priorities:

    • The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (H.R. 1796/S. 735) which reauthorizes the HRSA SCD Treatment Demonstration Program for another five years. SCDAA has been working to advance this legislation since it was introduced in the 118th Congress – thank you to all who have advocated for this legislation and a special thanks to our Congressional champions – Senators Tim Scott (R-SC) and Cory Booker (D-NJ) and Representatives John James (R-MI-10), Danny Davis (D-IL-07), Jen Kiggans (R-VA-2), Troy Carter (D-LA-2) and Marc Veasy (D-TX-33) for helping to get this bill across the finish line.
    • The Accelerating Kids’ Access to Care Act (H.R. 1509/S. 752) which creates a process by which to streamline access to out-of-state care for children with medically complex conditions, including sickle cell disease, insured by Medicaid or the Children’s Health Insurance Program (CHIP). This legislation was championed by Senators Chuck Grassley (R-IA) and Michael Bennet (D-CO) and Representatives Trahan (D-MA-3) and Miller-Meeks (R-IA-1).

    SCDAA would like to thank the many members of the sickle cell disease community who have engaged with Congress on these bills — we could not have done this without you! We are looking forward to more advocacy in 2026.

MARAC Statement: L-glutamine is an Effective Therapy for SCD

Feb. 3, 2026 – The Sickle Cell Disease Association of America, Inc. (SCDAA) Medical and Research Advisory Committee (MARAC) has identified l-glutamine as an effective therapy for sickle cell disease (SCD). MARAC recommends that those living with sickle cell disease discuss l-glutamine as a potential treatment with their providers.

In July 2017, Endari™, an oral powder form of l-glutamine, was approved by the FDA to reduce the acute complications of sickle cell disease in adult and pediatric patients aged five years and older. As a therapy, and at the correct dosage, l-glutamine has been shown to have a positive impact on sickle cell warriors and offer many health benefits. After the patent for Endari™ expired in 2024, the FDA approved generic forms of l-glutamine for the treatment of SCD. L-glutamine was also made available as a supplement for purchase as an over-the-counter product.

Although it is now readily available at health and nutrition stores and other retail locations, it is important to note that not all l-glutamine supplements are formulated to treat the complications of sickle cell disease. While MARAC and SCDAA agree that Endari™ and the generic forms of l-glutamine specifically formulated to treat sickle cell disease are a very effective therapy for sickle cell disease, warriors should not start a new therapy without guidance from a health care provider. We encourage individuals with sickle cell disease to discuss the use of l-glutamine with their sickle cell health care expert.

Additionally, those living with sickle cell disease who choose to take l-glutamine for treatment of SCD are recommended to continue to see their sickle cell health care provider at least once a year.

Download this statement.

SCDAA names Folk-Nagua to board

The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Krystal Folk-Nagua to the association’s board of directors. Folk-Nagua brings experience as a social work leader, advocate and individual living with sickle cell disease. 

She serves as senior director of programs at Girls for Gender Equity in Brooklyn, New York, where she leads initiatives that merge healing justice, abolitionist social work and youth leadership. In addition, she recruits, trains and supervises youth organizers and social work interns. Previously, she directed social work for charter schools in New York City and served as an adolescent and family therapist. 

Folk-Nagua holds a doctorate in clinical social welfare from New York University’s Silver School of Social Work and a Master of Social Work from Columbia University’s School of Social Work. She has appeared in publications and delivered lectures and trainings. She holds a Bachelor of Social Work from the University of Albany, The State University of New York. 

Thomas L. Johnson continues as the Sickle Cell Disease Association of America Inc. board chair. Adeyinka Ogunlegan was named board vice chair; Ed Flowers was named secretary and Kenneth Thorpe was named treasurer. 

MARAC Statement: Vaccinations

SCDAA’s MARAC Encourages Individuals with Sickle Cell Disease to Speak with Their Health Care Providers About Vaccinations

Jan. 16, 2026 – Recent news and discussion about vaccinations can be confusing to the sickle cell community. SCDAA’s Medical and Research Advisory Committee (MARAC) strongly encourages those living with sickle cell disease to discuss vaccinations with their providers and to keep their vaccinations updated.

Individuals with sickle cell disease (SCD) are at an increased risk of severe infections due to decreased function of the spleen. Functional asplenia, the absence of splenic function without having the spleen removed by surgery, happens in people with sickle cell disease and can make sickle cell warriors much more vulnerable to infection than the general population. Without preventive care, including vaccination and penicillin prophylaxis, many children with sickle cell disease could experience severe infections.Although treatments for sickle cell disease have improved significantly since the 1990s, individuals with SCD can still be harmed by infections. Studies show that vaccines are powerful shields against serious bacterial and viral infections in sickle cell warriors. Even more than the general public, it is important that individuals with sickle cell disease protect themselves from infections through maintaining vaccinations.

The American Academy of Pediatrics (AAP) has provided guidance on the administration of vaccines for the general public, and MARAC endorses these tools in helping communities understand and stay informed about the importance of vaccinations:

We encourage all patients/caregivers to discuss vaccinations with their physician.

Download this statement.

DECEMBER 2025 LEGISLATIVE BRIEFING

Download this Briefing

2025 – AN EVENTFUL YEAR IN HEALTH POLICY AND ADVOCACY

2025 brought sweeping changes to the political environment at an intensely quick pace, including many shifts which impact the sickle cell disease community. Along with these challenges, we also saw new opportunities for the sickle cell disease community to stand together.

The year began with President Trump issuing a record number of 142 executive orders in just 100 days and articulating a new approach to federal funding for health care. Initially, we prepared for extensive cuts and a reorganization of the Department of Health and Human Services, including sickle cell disease activities, into the Administration for a Healthy America (AHA). Instead, we survived the longest government shutdown in U.S. history, lasting 43 days.

Ultimately, we did not see the creation of the AHA, and Congress passed a continuing resolution to temporarily fund the federal government at existing funding levels until the end of January 2026. All three federal sickle cell disease programs have been maintained, but advocacy for sustained federal funding will continue.

The summer was dominated by passage of H.R. 1, the “One Big Beautiful Bill Act.” H.R. 1 made the largest cuts to Medicaid in the program’s history, and over time will reduce Medicaid eligibility and enrollment, as well as limit state financing mechanisms. With implementation of H.R. 1 underway and the anticipated expiration of tax credits for Marketplace plans at the end of 2025, SCDAA will continue to prioritize access to insurance for sickle warriors in 2026. SCDAA has created this list of tips of what individuals with sickle cell disease can do now to protect their Medicaid coverage. SCDAA will continue to closely track implementation of the Medicaid changes and provide ongoing information to the community.

Protecting Medicaid and the federal sickle cell programs were the main priorities during SCDAA’s Advocacy Days in May. Thank you to all who participated – your advocacy is meaningful and raises the voice of the sickle cell disease community. These issues will persist in 2026, and SCDAA will continue its advocacy efforts. The good news is that the sickle cell community has strong champions on both sides of the aisle in Washington and a unique story to tell.

We end the year (and this article!) with huge thanks to all of our member organization leaders, individuals with sickle cell and caregivers who advocated this year on behalf of the community. Thank you for reading our many eblasts, emailing and calling your members of Congress, spreading the word to your colleagues and friends and always showing up for sickle cell.

NATIONAL ACADEMIES RELEASES FINAL REPORT ON SICKLE CELL DISEASE AND SOCIAL SECURITY DISABILITY EVALUATIONS

On December 9, the National Academies of Sciences, Engineering, and Medicine (NASEM) released the second and final report related to sickle cell disease and Social Security disability evaluations. As a result of outreach from the sickle cell disease community and members of Congress about the barriers faced by sickle cell warriors when applying for Social Security disability, the Social Security Administration (SSA) tasked NASEM with reviewing the latest published research and science and producing two reports on best practices and community experiences in the management and treatment of sickle cell disease. The interim report was released in June of this year.

SSA was specifically directed not to make recommendations, but to instead provide findings and reach conclusions on SCD. SCDAA is pleased with the conclusions included in the report and issued a statement in support of the NASEM Report and its “overarching conclusions,” which recognize:

  • There is opportunity to improve the accuracy in the determination of disability by considering the broad variation in sickle cell disease 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.
  • Sickle cell disease is stigmatized in ways that may affect an individual’s decision to seek care.
  • The frequency of treatment encounters for acute complications – whether that be the emergency department, inpatient settings or even prescribing of pain medication – is too restrictive a measure of disease severity under the current disability criteria.
  • Access to coordinated comprehensive care across the lifespan will improve outcomes. A lack of access to coordinated care makes it more difficult to obtain an accurate diagnosis and leads to a lack of documentation in medical records. Both can impact access to disability benefits.
  • Transition from adolescence to adulthood is already a challenging time for individuals with sickle cell disease. Children receiving Social Security disability benefits may need to be redetermined using the adult criteria at age 18. Navigating the differences between the child and adult criteria is challenging for individuals with SCD and their providers.

SCDAA believes this report provides additional justification with which to pursue changes to the current disability criteria for sickle cell disease. SCDAA will continue to advocate for the revision of the disability criteria to make it easier for sickle cell warriors to access these benefits.

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) 

SCDAA Receives the ASH Outstanding Service Award

SCDAA was honored to receive the Outstanding Service Award during the American Society of Hematology’s 67th ASH Annual Meeting and Exposition. The award recognizes individuals or organizations in the public or private sector who have displayed effective behind-the-scenes leadership in areas relevant to the mission of the American Society of Hematology. Congratulations to our fellow awardees, including SCDAA member organization Sick Cells and the Sickle Cell Community Consortium. Read more.

Hear SCDAA President and CEO Regina Hartfield’s acceptance speech.