News

Nearly one year ago, the Food and Drug Administration (FDA) approved two new gene therapies for the treatment of sickle cell disease.  The Sickle Cell Disease Association of America Inc. (SCDAA) is pleased that the manufacturers of these two FDA-approved gene therapy treatments have entered into agreements with the Centers for Medicare & Medicaid Services The post SCDAA Statement: CMS Cell and Gene Therapy Access Model 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 new board officers: Dr. Edward Donnell Ivy as chief medical officer, Dr. Crawford Strunk as vice chief medical officer and Adeyinka O. Ogunlegan as secretary.    Dr. Edward Donnell Ivy (left) is The post SCDAA names board officers appeared first on Sickle Cell Disease Association of America Inc..

SCDAA Medical and Research Advisory Committee (MARAC) Statement: Pfizer’s Voxelotor (Oxbryta®) Withdrawal 9/27/24 What is the news? Pfizer announced the withdrawal of voxelotor (Oxbryta®) from national and global markets on September 25, 2024.  Clinical research was also stopped. “Pfizer’s decision is based on the totality of clinical data that now indicate the overall benefit of The post MARAC Statement: Pfizer’s Voxelotor (Oxbryta®) Withdrawal appeared first on Sickle Cell Disease Association of America Inc..

All across the country, our member organizations are hosting exciting events for Sickle Cell Awareness Month this September. Check out the list below to find an event near you. Alabama Sept. 22: Annual Sickle Cell Walk-A-Thon | Dothan, AL Hosted by the Southeast Alabama Sickle Cell Association, Inc. California Sept. 18-21: 16th Annual SCD Educational Summit | The post Sickle Cell Awareness Month 2024 appeared first on Sickle Cell Disease Association of America Inc..

CLICK HERE TO LEARN MORE AND MAKE A NOMINATION Do you know a community health worker who exemplifies excellence and commitment to the sickle cell community? Nominate them for a SCDAA P.O.W.E.R CHW Award! The deadline to nominate someone is Friday, August 23. Awards will be granted during the Annual National Convention in October. The post CHW P.O.W.E.R Award appeared first on Sickle Cell Disease Association of America Inc..

MARAC Statement: Parvovirus B19, Fever and Urgent Care Aug. 13, 2024 – More infections with parvovirus B19, also known as “fifth disease” or “slapped-cheek disease,” are showing up in 2024 [1,2]. WHY IS THIS IMPORTANT FOR SICKLE CELL DISEASE? Parvovirus B19 causes a special problem in sickle cell disease called aplastic crisis [3,4,5], and infects The post MARAC Statement: Parvovirus B19, Fever and Urgent Care appeared first on Sickle Cell Disease Association of America Inc..

The World Health Organization (WHO) recently published a comprehensive package of interventions for sickle cell disease management in Africa. The package outlines a holistic and integrated approach to disease management. This information is useful for the general context of sickle cell advocacy. Current and former members of SCDAA’s Medical and Research Advisory Committee (MARAC) were The post WHO Publishes New Guidelines for SCD Management in Africa appeared first on Sickle Cell Disease Association of America Inc..

Know Your Rights in the Emergency Department – Biden Administration Releases New Guidance The Centers for Medicare & Medicaid Services (CMS) is promoting new resources to remind individuals about their rights in the emergency room. Under the Emergency Medical Treatment and Labor Act, better known as EMTALA, all hospitals that participate in the Medicare program The post SCDAA Statement: Know Your Rights in the ER appeared first on Sickle Cell Disease Association of America Inc..

SCDAA joins the National Medical Association, the American Medical Association, the American Association of Medical Colleges, and other groups, in advocating for DEI programs in medical institutions. Sickle cell disease (SCD) is a serious and complex disease that affects a disproportionate amount of people of color in the United States. As such, it exists in The post Statement on the Inclusion of DEI in Medical School Curriculum appeared first on Sickle Cell Disease Association of America Inc..

It is with great sadness that SCDAA shares the news of the passing of Monica Rockwell, executive director of SWGA Sickle Cell Awareness, on April 10, 2024. Monica was a tireless advocate and dedicated community health worker. She was a steadfast supporter of SCDAA’s education and outreach efforts and worked with Kevin Amado, our Senior The post In Memory of Monica Rockwell appeared first on Sickle Cell Disease Association of America Inc..