Author Archives: Emma Day

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.

Fulcrum Therapeutics to Host Congressional Briefing

Understanding the Need for Improved Patient Access to Sickle Cell Disease Treatment Options
Hosted by Fulcrum Therapeutics

Thursday, March 19, 2026
10:00 to 11:00 AM ET
Rayburn House Office Building, Room 2043

This briefing will bring together clinicians, patient advocates, researchers, and policy leaders for a moderated panel discussion on the current treatment landscape for sickle cell disease and what Congress can do to improve access and outcomes for the 100,000 Americans living with this condition. SCDAA President and CEO Regina Hartfield is one of four featured panelists.

Sickle cell disease disproportionately impacts Black and Latino communities and remains one of the most underfunded and under-resourced conditions in federal health policy. This is a conversation worth being in the room for.

RSVP Here

Black History Month 2026: Dr. Charles Drew

Our final #SCDHistoryHighlight of 2026 explores the life and career of Dr. Charles Drew, a pioneering physician whose work paved the way for our modern-day blood banking system. Thanks to his research, individuals with sickle cell disease have access to safe and timely blood transfusions.

Dr. Drew was born in 1904 in Washington, D.C. He was a talented athlete and earned a partial scholarship to Amherst College in Massachusetts, where he was one of the few African Americans on campus. After graduating, he taught biology and coached at Morgan College (now Morgan State University) before attending medical school at McGill University in Canada. During his residency at Montreal Hospital, he developed an interest in blood transfusions and their effectiveness in treating shock.

He began his medical career at Howard University, practicing as a faculty instructor for pathology and later taking an appointment at the Freedman’s Hospital as a surgeon. In 1940, he completed his postdoctoral studies at Columbia University and became the first African American to earn a Doctor of Science in Medicine degree.

His postdoctoral thesis, titled “Banked Blood: A Study on Blood Preservation,” determined how to process and preserve blood plasma — a strategy that increased the length of time that blood could be stored. This research was completed in time to be of great use during World War II, and Dr. Drew led efforts to collect, preserve and internationally ship approximately 14,500 liters of blood through the Blood for Britain campaign.

In 1941, Dr. Drew was appointed assistant director of the first American Red Cross Blood Bank. During his time with the organization, he invented the “bloodmobile,” which allowed blood to be collected and transported on-the-go. Dr. Drew strongly objected to the blood bank segregating their blood storage and ultimately resigned from his position in protest of this racist policy.

Dr. Drew went on to rejoin faculty at Howard University, where he worked until he tragically passed away in a car accident at the age of 45. Dr. Drew’s research lay the foundation for safe and accessible blood transfusions, and his advocacy promoted equity in medicine — key elements of wellness for individuals with sickle cell disease across the globe.

Black History Month 2026: Dr. Marilyn Hughes Gaston

This week, meet Dr. Marilyn Hughes Gaston, whose dedication and passion for health care led her to pave the way for equity. Dr. Gaston’s special focus on sickle cell disease helped shape our understanding of the condition and its management.

Born in 1939, Dr. Gaston’s family faced poverty and discrimination, but she knew by age nine that she wanted to become a physician. When she was a teenager, her mother became ill with what would later be diagnosed as cervical cancer. The family had no health insurance and faced other barriers to access, which meant Dr. Gaston’s mother was not properly treated. After witnessing her mother collapse in their living room due to the lack of care, Dr. Gaston resolved to overcome the odds and pursue a career in medicine.

Dr. Gaston earned an undergraduate degree at the University of Miami before enrolling in the University of Cincinnati College of Medicine, where she was the only Black woman in her class. She became interested in sickle cell disease during her internship at Philadelphia General Hospital in 1964. According to Changing the Face of Medicine, “one evening, during her internship, Dr. Gaston admitted a baby with a badly swollen hand. No trauma was reported, and she could not find the cause of the swelling. Her supervising resident suggested she check the blood work for evidence of sickle cell disease. The child did have SCD, and his hand was swollen from infection. Gaston was appalled that she hadn’t even considered checking for this condition and set out to learn everything she could about it.”

Dr. Gaston dutifully began her studies of sickle cell disease, securing federal grants and establishing herself as a leading expert in the condition. In 1986, she published her landmark research on penicillin prophylaxis. Her national study determined that giving children with SCD preventative penicillin from birth reduced the complications of sickle cell disease. Her work indicated that newborn screening was key to identifying SCD early and treating it properly. Newborn screening now identifies many conditions beyond sickle cell and is standard practice in U.S. public health.

In addition to her groundbreaking work in the sickle cell space, Dr. Gaston spent many years as a medical expert with the National Institutes of Health and went on to become the director of the Bureau of Primary Health Care in the U.S. Health Resources and Services Administration. She was the first Black woman to direct a public health service bureau in the country. Her dedication to improving health care for poor and underserved families has left a lasting mark on history. Thank you, Dr. Gaston, for your commitment to our community.

Black History Month 2026: Dr. Roland Scott

Our next #SCDHistoryHighlight shines a light on the life and legacy of the “father of sickle cell disease” – Dr. Roland B. Scott. Dr. Scott’s groundbreaking research and dedication to patients during a time of intense discrimination paved the way for progress in SCD treatment.

Dr. Scott was born in 1909 and graduated with his medical degree from Howard University in 1934. He spent the majority of his career in the pediatrics department of Howard University. During this time, he began to notice the high number of African American children in the emergency room experiencing sickle cell symptoms and complications.

Dr. Scott was a trained allergist, but he switched his focus to help improve treatment for this misunderstood disease. A compassionate pediatrician, Dr. Scott held office hours in the evenings during which he would see African American children and families who were discriminated against and denied access to medical treatment.

Dr. Scott would go on to publish hundreds of articles on sickle cell disease during his time at Howard University. Although he did not specialize in hematology, in 1948 Dr. Scott published a paper on the sickling of red blood cells in newborns. This paper established a better understanding of sickle cell disease and laid the groundwork for newborn screening as we know it today.

In addition to being a dedicated researcher, Dr. Scott was a fierce advocate for sickle cell disease. His advocacy played a large role in the federal government’s passing of the Sickle Cell Anemia Control Act of 1971, which ensured nationwide funding for SCD research and treatment.

In 1972, Dr. Scott founded the Howard University Center for Sickle Cell Disease, which continues to conduct research and provide care to sickle cell patients today. He passed away in 2002. Dr. Scott’s work and advocacy changed the landscape for sickle cell disease, and we owe so much of our capability to treat and understand sickle cell to his efforts.

Black History Month 2026: 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.