Category Archives: News

SCDAA Hosts EL-PFDD Meeting on Sickle Cell Disease

HANOVER, Md. — The Sickle Cell Voices Alliance, a partnership of the Sickle Cell Disease Association of America, Inc., the Sickle Cell Disease Association of Canada and Sickle Cell Society, United Kingdom, is hosting an externally led patient-focused drug development (EL-PFDD) meeting.

This virtual forum will bring together those living with sickle cell disease, caregivers, healthcare professionals, researchers and other opinion leaders for an opportunity to share firsthand experiences and identify priorities for future therapeutic development with the U.S. Food and Drug Administration (FDA) and other regulatory authorities.

The meeting, “Sickle Cell Disease Voices Shaping Change,” will take place virtually on Wednesday, Jan. 27, 2027, from 11 a.m. to 3 p.m. EST (UTC-5).

“The Sickle Cell Disease Association of America Inc. and our partners are pleased to have this opportunity,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America Inc. “This forum brings together sickle cell patient and caregiver voices to ensure early involvement in drug development and encourage the FDA, other regulatory authorities, and key stakeholders to consider a broader range of clinically meaningful endpoints when evaluating therapies for sickle cell disease. This meeting will have global implications, and we want people worldwide to participate.”

Participants will have the opportunity to contribute through live testimony, panel discussions, audience polling and written comments. The perspectives collected during the meeting will be summarized in a Voice of the Patient Report, which will be submitted to the FDA and other key stakeholders to support future regulatory review, clinical trial design and therapeutic innovation.

John James, CEO of the Sickle Cell Society in the United Kingdom:

“We are delighted to be part of this initiative. This is an important opportunity for people living with sickle cell disorder, their families and caregivers to share their experiences directly with those shaping the development of future treatments. By listening to the people who understand the realities of sickle cell best, we can build a deeper understanding of its impact and help ensure that new treatments reflect the needs and priorities of the community.

“We strongly encourage people affected by sickle cell to take part in this virtual meeting and make their voices heard. By working together across our international community, we can help shape the future of sickle cell care and treatment for generations to come.”

Biba Tinga, president and executive director of the Sickle Cell Disease Association of Canada:

“Laboratory results matter, but what matters most is whether a treatment changes a life. We must ensure warrior and caregiver voices guide the development of therapies that deliver improved quality of life, longevity and hope for people living with sickle cell disease.”

To learn more about the meeting, visit sicklecelldisease.org/ELPFDD2027.

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 its more than 50 member organizations support sickle cell research, public and professional health education and patient and community services. (sicklecelldisease.org)

The Sickle Cell Society works to improve the lives of people affected by sickle cell and to create a future where everyone living with the condition receives the care, support and opportunities they deserve. The society supports individuals and families, influences decision-makers, educates professionals, raises awareness and works with partners across health, government and communities to tackle the inequalities experienced by people living with sickle cell. The work spans information, support, advocacy, education, community engagement and policy change. (sicklecellsociety.org)

The Sickle Cell Disease Association of Canada/L’Association d’Anémie Falciforme du Canada (SCDAC/AAFC) is Canada’s national patient-led organization dedicated to improving the lives of the more than 6,500 people living with sickle cell disease, along with their families and caregivers. Through advocacy, education, research, policy leadership and community engagement, SCDAC advances equitable access to timely diagnosis, comprehensive care, innovative treatments and improved health outcomes across Canada. As Canada’s national voice for the sickle cell community, SCDAC is committed to ensuring that every person living with sickle cell disease has the opportunity to live a longer, healthier and more equitable life. (sicklecelldiseasecanada.com)

MARAC Statement: Response to Oxbryta® Update

MARAC Statement: Response to Oxbryta® Update

August 6, 2026 – The Medical Research and Advisory Committee (MARAC) of the Sickle Cell Disease Association of America, Inc., (SCDAA) is saddened to hear the news that Oxbryta® (voxelotor) will not be made available for the treatment of sickle cell disease.

Based on recent engagement with the Food and Drug Administration (FDA), Pfizer was informed that there is not a viable path to make Oxbryta available again in the U.S. We understand that this news is disappointing, especially given the significant unmet needs for people living with sickle cell.

In their statement, Pfizer confirmed its continued commitment to the sickle cell community and stated that they will be concentrating their ongoing research efforts on osivelotor, a sickle hemoglobin (HbS) polymerization inhibitor being investigated as a potential treatment for sickle cell disease (SCD). Pfizer will also continue to share Oxbryta data as it is published and has agreed to engage with MARAC in the near future to discuss these developments. MARAC’s sickle cell healthcare providers and researchers will continue to represent the sickle cell community in conversations with Pfizer and other industry groups and will help keep the sickle cell community informed of developments.

Although progress has been made in the treatment of sickle cell disease, there is still a limited number of therapies available for individuals suffering from the 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 to 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 the statement here.

Nominate a CHW for the 2026 CHW P.O.W.E.R Award

As we get closer to the SCDAA Annual Convention we would like to recognize the amazing work performed by community health workers (CHWs) with the SCDAA CHW P.O.W.E.R. Award. This award recognizes exemplary performance by individuals 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 this document and submit it via email to Kevin Amado, SCDAA senior community impact & engagement manager, at kamado@sicklecelldisease.org. The deadline for submission is Friday, August 14.

The winner will receive their award at convention on the night of the gala.

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.

Novo Nordisk Announces Promising Topline HIBISCUS Study Results

In an announcement, Novo Nordisk shared that Etavopivat is the first in a new class of drugs to meet both co-primary endpoints in the phase 3 HIBISCUS trial, substantially reducing vaso-occlusive crisis events and improving hemoglobin response in sickle cell disease. SCDAA is pleased to hear this news. We will continue to monitor these developments and look forward to learning more about the results of this study.

Read the statement.

SCDAA Masterclass (Hosted by Agios Cheat Codes) Now Available

Our final 2025 SCDAA Masterclass – Sickle Cell in the Media: Scene & Heard (Hosted by Agios Cheat Codes) – is now available! Recorded live at the 2025 SCDAA Convention in Chicago, this special Masterclass dives into how sickle cell disease is portrayed in film, TV and beyond.

From blockbuster films to powerful documentaries, our panelists (patients, advocates and filmmakers) unpack how storytelling can change minds, challenge stigma and build connection. Featuring voices from the sickle cell community, this is one conversation you don’t want to miss.

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 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.