About 100,000 people in the United States live with sickle cell disease, and it falls hardest on Black Americans. On Oct. 20 the Department of Health and Human Services announced seven awards that widen the federal network meant to get them care, growing it from five regions to seven.
The money goes through the Health Resources and Services Administration (HRSA) to Regional Coordinating Hubs under a new program, the Sickle Cell Disease Regional Care Excellence Program. Each hub must partner with at least three “spokes,” each made up of a clinical center and at least one community organization, so that specialty care reaches people closer to where they live. HRSA’s funding notice put total money for the round at about $6.65 million, with individual awards capped at $950,000.
The distance to a specialist is the point. Thomas Jefferson University in Philadelphia won one of the hubs. Its lead, Dr. Sophie Lanzkron, directs what the university describes as the largest prospective sickle cell registry in the country. The hub plans to use telemedicine to reach places such as Erie, Pennsylvania, which has no comprehensive sickle cell center, Hoodline reported. Nearly 4,000 Pennsylvanians have the disease.
What is at stake
The disease can cause severe pain crises, organ damage and stroke. A study of Medicaid and Medicare data from 2008 to 2016 found that publicly insured patients had an average life expectancy of 52.6 years, against 73.5 years for men in the general U.S. population. That is a gap of roughly two decades.
Insurance is part of the story. Medicaid covers about half of people with sickle cell disease, according to KFF Health News, which makes state Medicaid programs the main gate to the first gene therapies approved for the disease. Vertex Pharmaceuticals’ treatment lists at $2.2 million per patient and Bluebird Bio’s at $3.1 million, before hospital costs. Under a federal payment model reported in January, 33 states, Washington, D.C., and Puerto Rico agreed to pay manufacturers based on whether the therapies work. Missouri expects about 30 of its roughly 1,000 Medicaid enrollees with the disease to be treated over three years.
Those numbers show the mismatch in scale. The therapies reach dozens of patients per state. The hubs are meant to reach the many more who depend on routine care: pain management, preventive treatment and a hematologist within reach.
HHS has not said which institutions won the other six awards in the material published so far, or how many patients each hub is expected to serve. HRSA says the program will track indicators of quality of life as well as access, which would give the first regional numbers on whether the expanded network changes outcomes for patients.
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