A surge in trials testing gene-editing therapies in adults has excited researchers, but some wonder whether even high-income countries can afford them.
in which blood stem cells were taken from her, altered with the gene editor CRISPR to compensate for the sickle cell mutation, and returned to her body.
Since then, there has been no known attempt to produce gene-edited babies, but somatic gene-editing therapies using CRISPR or related methods have surged. Clinical trials are underway for blood disorders, cancers, diabetes, blindness, and more. The CRISPR method used to treat Gray has already been tested in more than 75 people and could be approved in the United States this year.
Yet over half of the more than 300,000 people born annually with sickle cell disease live in three countries where few would be able to afford that: Nigeria, the Democratic Republic of the Congo, and India. It’s unclear how even the U.S. health care system can manage such costs. “It’s heartbreaking because I do still have family members who suffer from sickle cell disease,” says Gray, who was treated for free as part of a clinical trial.
New ways to commercialize or pay for these therapies may be needed, too. “I’m afraid that we’re not ready,” Steve Pearson, who heads the Institute for Clinical and Economic Review, told the summit. “I don’t know how we’re going to be able to create the pricing, the payment, and the intellectual property innovation at the speed that the science is bringing these treatments forward.”
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