SCDAA stands in solidarity with the warriors, advocates and community-based organizations who have been recently affected by natural disasters, including the devasting wildfires in California and the many hurricanes which hit southern states in the fall. As we pray for a speedy recovery, we send our sincere gratitude to the emergency response teams who worked tirelessly to contain the fires and provide hurricane assistance. If.....

It is with great sadness that SCDAA shares the news of the passing of Frank Reddick on Dec. 23, 2024. Frank was the president and CEO of the Sickle Cell Disease Association of Florida, an SCDAA member organization headquartered in Tampa. He was a steadfast sickle cell advocate and was the head of the Florida state sickle cell chapters. As a former Tampa city councilman,.....

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 (CMS) to participate in the Cell and Gene Therapy (CGT).....

The Senate and the House of Representatives recently introduced resolutions expressing support for the designation of September 2024 as Sickle Cell Disease Awareness Month. In the Senate, the resolution was led by Senators Tim Scott (R-SC) and Cory Booker (D-NJ) along with 10 bipartisan Senators......

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Today, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model, a demonstration aimed at improving access to cell and gene therapy products in the Medicaid program. CMMI chose sickle cell disease (SCD) as the first indication for the model. The intent of the model is to provide access to the two recently approved gene.....

An update from John Otsuki, SCDAA government relations manager As I am sure you’re aware, the United States recently completed a midterm election. All members of the House of Representatives were up for election or re-election, as they are every 2 years, as were 34 Senators (roughly 1/3 of the total). Before the election, the Democrats controlled both the Senate and the House, both by.....

This weekend’s Saturday Night Live skit about the recent historic approvals of potentially curative gene therapies for sickle cell disease is distasteful at best and harmful at worst. Earlier this month, the Food and Drug Administration approved groundbreaking new treatments that could change the lives of thousands. SNL chose to cast a spotlight on this news with a tone-deaf skit depicting a workplace Yankee Swap.....