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Sickle cell disease gene therapies Casgevy Lyfgenia insurance cost issues


New sickle cell gene therapies are a breakthrough, but prices are still too high

The approval of two gene therapies to treat sickle cell disease has given hope to patients who suffer from the debilitating disease, which overwhelmingly affects Black people and people of color.

Health officials now face a challenge in finding a way to provide equitable access to the costly treatments.

The crippling episodes of pain from the genetic blood disorder make life unpredictable for patients like Michael Goodwin. Sickle cell has forced him to leave his job and at times taken him away from his family.

“I can be in the hospital 20 days out of the month sometimes,” said the 36-year-old Goodwin. “I’ve been in hospital a lot more as I’ve gotten older, which hurts me, because I have a son now and I’m married.”

Still, he’s hesitant to try the new one-time gene therapies because they require months of intensive medical preparation, including chemotherapy, to prepare patients’ bone marrow stem cells for extraction and gene editing.

Goodwin also worries about the cost. Vertex Pharmaceuticals‘ gene therapy Casgevy lists for $2.2 million, while Bluebird Bio‘s treatment Lyfgenia lists for $3.1 million.

“I do have insurance, but … I already have medical bills,” he said.

The therapies were cheered as a long-awaited breakthrough to treat the disease when they were approved in December. But the hurdles toward ensuring equitable access, and the lack of infrastructure in place to administer the nascent treatments, have raised questions about just how many people will benefit from them.

Blood sample of patient positive
tested for sickle cell.

Kitsawet Saethao | Istock | Getty Images

Goodwin’s hesitancy to pursue treatment is no surprise to Dr. Julie Kanter, director of the Adult Sickle Clinic at the University of Alabama at Birmingham.

“My guess is even if we opened the gates today to everybody getting this therapy, at most only 10% of those individuals affected by sickle cell would want this therapy,” said Kanter, who also serves as the president of the National Alliance of Sickle Cell Centers. “And even that would be too much for us to manage right this second.”

More than 100,000 Americans have sickle cell disease, according to Centers for Disease Control and Prevention estimates, and between 50% and 60% of them covered are covered by the federal and state insurance program Medicaid.

Kanter said it will take time to ramp up capacity and to set up facilities across the country to treat patients at scale.

“We really hope that having the National Alliance of Sickle Cell Centers will allow us to strengthen our centers to generally care better for people living with this disease, which we haven’t been able to do before because the cost is a problem,” she said.

High cost brings a new payment model

As they figure out how to ramp up treatment capacity, state and federal officials are grappling with how to provide access to the costly new treatments for the thousands of patients covered by the Medicaid safety net program.

“It’s giving us an opportunity to respond to folks…



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Sickle cell disease gene therapies Casgevy Lyfgenia insurance cost issues

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