News

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. The post SCDAA names Folk-Nagua to board first appeared on SCDAA.

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. The post MARAC Statement: Vaccinations first appeared on SCDAA.

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 post DECEMBER 2025 LEGISLATIVE BRIEFING first appeared on SCDAA.

On December 9, 2025, the National Academies of Sciences, Engineering, and Medicine (NASEM), released the second and final Sickle Cell Disease in Social Security.... The post SCDAA Response to National Academies Release of Final Report on Sickle Cell Disease and Social Security Disability Evaluations first appeared on SCDAA.

On July 4, 2025, President Trump signed into law a bill that cuts $1 trillion from the Medicaid program and makes sweeping changes to eligibility, enrollment processes and more. The new requirements don’t go into effect immediately – but we know they are coming. Here are some steps you can take to protect your Medicaid coverage now and, in the future, as the new requirements go into effect. The post Preparing for Medicaid Changes first appeared on SCDAA.

SEPTEMBER 2025 LEGISLATIVE BRIEFING The post SEPTEMBER 2025 LEGISLATIVE BRIEFING first appeared on SCDAA.

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 post MARAC Statement: Pfizer Inclacumab Announcement first appeared on SCDAA.

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! The post SCDAA’s CHW Training Program Accredited by Maryland first appeared on SCDAA.

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 post P.O.W.E.R. CHW Award Nominations are Now Open! first appeared on SCDAA.

On July 15, 2025, the Centers for Medicare & Medicaid Services (CMS) announced expansions to the Cell and Gene Therapy (CGT) Access Model. The post CMS Expands Access to the CGT Access Model first appeared on SCDAA.