The price of breakthrough gene therapies to treat and cure sickle cell disease (SCD) is much less than the lifetime medical costs of living with the disease, The New York Times highlights.
The raw numbers: Medical costs for people with sickle cell disease (SCD) averaged $1.7 million over the course of their lifetime, a recent study finds. Including non-medical bills, total costs per patient average $63,436 annually, another recent study says.
One family’s experience: Ashley Valentine, co-founder of the patient advocacy group Sick Cells, told The New York Times she had to take three months off work while her father gave up his job to care for her brother, Marqus, who had SCD; Marqus died in 2020 at age 36 from a stroke caused by SCD.
Many families’ experiences: SCD patients have to give up jobs because they can't go out, or move south to avoid the pain endured during cold winters.
But a cure is on the way—two, in fact, from BIO members Bluebird Bio and Vertex/CRISPR Therapeutics, which clinical trials have shown to eliminate patients’ blood of the “misshapen red cells.”
Why it matters: The gene therapies require hospitalization and can cost around $1 million—but that’s still far less than the cost of a lifetime with the disease.
Equity considerations: Sick Cells collaborated on a paper finding concerns of people with SCD, who are mostly Black and Latinx, are ignored during typical health technology assessments, Bio.News reported last year.
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