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Gene Therapy Could be Accessible for Black Americans

Sickle cell disease (SCD) will be the first focus of the Cell and Gene Therapy (CGT) Access Model, which was announced in February 2023 by the Biden-Harris Administration. The model is designed to improve health outcomes, increase access to cell and gene therapies, and lower costs for some of the nation’s most vulnerable populations.

Sickle cell disease is an extremely painful condition that disproportionately impacts Black Americans and has had limited treatment options. In the United States, more than 100,000 people live with SCD. Individuals with the disease have a shorter life expectancy, by more than 20 years, compared to someone living without SCD. Additionally, many long-term health complications from SCD — including stroke, acute chest syndrome, and chronic end-organ damage — can lead to higher rates of emergency department visits and hospitalizations. Patients with SCD experience challenges with access to quality and affordability of care. 

“Many of the more than 100,000 Americans with sickle cell disease face difficulty accessing effective health care and groundbreaking treatments. While medical advancements bring us closer to cures, too many individuals with sickle cell disease and their loved ones still face challenges obtaining the care they need,” said HHS Secretary Xavier Becerra

The CGT Access Model is part of the Administration’s effort to drive down prescription drug costs further and was developed in response to an executive order that President Biden issued in October 2022 directing the Department of Health and Human Services to consider developing models that increase access to novel therapies and lower the high cost of drugs. The model, led by the Centers for Medicare & Medicaid Services’ (CMS’) Innovation Center, will test outcomes-based agreements (OBAs) for groundbreaking CGTs.

Approximately 50% to 60% of people living with SCD are enrolled in Medicaid. Hospitalizations and other health episodes related to SCD cost the health system almost $3 billion per year. Gene therapies for the treatment of SCD, as well as other complex conditions, hold significant potential to improve patient outcomes and can reduce long-term health spending, but they can also pose challenges to state budgets due to the high cost of the therapy.

Over the next year, CMS will partner with participating states and manufacturers to build a framework that expands access to gene therapies for treating SCD. The CGT Access Model will begin in January 2025, and states may choose to begin participation at a time of their choosing between January 2025 and January 2026.

For additional information, see the fact sheet – PDF and CGT model page.

Ebony Huerta Wells has over 25 years of writing and media experience. She was a former business journalist with a major newspaper and worked for other niche publications.

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