News

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 The post MARAC Statement: Pfizer Inclacumab Announcement appeared first on Sickle Cell Disease Association of America Inc..

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 The post SCDAA’s CHW Training Program Accredited by Maryland appeared first on Sickle Cell Disease Association of America Inc..

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 The post P.O.W.E.R. CHW Award Nominations are Now Open! appeared first on Sickle Cell Disease Association of America Inc..

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 The post CMS Expands Access to the CGT Access Model appeared first on Sickle Cell Disease Association of America Inc..

On July 4, President Trump signed the One Big Beautiful Bill Act into law. SCDAA shares the concerns of many in our SCD community regarding the impact that this act will have on the Medicaid program, access to care and health care overall for sickle cell warriors. We are in the process of carefully analyzing The post SCDAA Statement on the Federal Budget Bill appeared first on Sickle Cell Disease Association of America Inc..

With great sadness, SCDAA shares the news of the passing of James E. Rawlings, president and CEO of Michelle’s House (SCDAA, CT), on Sunday, May 25. In addition to leading one of our oldest member organizations, Mr. Rawlings was a past SCDAA National board member and served as treasurer from 2004-2007. In a statement, Michelle’s House The post In Memory of James E. Rawlings appeared first on Sickle Cell Disease Association of America Inc..

The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Joel Nepomuceno as membership engagement manager. He brings experience in membership strategy, community building, project management and marketing.  Prior to joining the Sickle Cell Disease Association of America Inc., Nepomuceno served as the The post Sickle Cell Disease Association names membership manager appeared first on Sickle Cell Disease Association of America Inc..

SCDAA mourns the loss of prominent pediatric hematologist and sickle cell provider Dr. Winfred Wang, who passed away on April 9 at the age of 82. Dr. Wang practiced at St. Jude Children’s Research Hospital in Memphis, Tennessee. He helped to pioneer the use of hydroxyurea for children with sickle cell disease through his research, The post In Memory of Dr. Winfred Wang appeared first on Sickle Cell Disease Association of America Inc..

With great sadness, SCDAA shares the news of the loss of Dr. Gwendolyn Poles-Corker on April 8, 2025. The 71-year-old was a trailblazing physician, educator, advocate and sickle cell warrior. She passed away from complications of her disease, but she never let it hold her back. She overcame the odds and brought healing and care The post In Memory of Dr. Gwendolyn Poles-Corker appeared first on Sickle Cell Disease Association of America Inc..

The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Natasha Thomas as events and special projects manager. Thomas previously worked for the association, including as an events consultant for the last three years.  In her new position, Thomas will manage the planning, The post SCDAA names events manager appeared first on Sickle Cell Disease Association of America Inc..