Aetna will now pay for more kids with a devastating rare disease to get a $2.1 million drug, reversing earlier denials


Isaac Olthoff Zolgensma

  • Health insurer Aetna will now cover a new, $2.1 million treatments for more kids living with a devastating rare disease. 
  • Under the policy change, 11-month-old Isaac Olthoff will now be able to get the one-time treatment. “Maybe an hour and a half ago we got a call,” his dad, Ben Olthoff, said. “We’re pretty happy.”
  • The policy change comes after Business Insider’s reporting highlighted families whose kids have been denied the treatment.
  • Visit Business Insider’s homepage for more stories.

In a policy reversal, the health insurer Aetna will now cover a $2.1 million, one-time treatment for more kids with the rare and devastating disease spinal muscular atrophy.

Aetna previously covered the therapy only for patients younger than 9 months old. The health insurer’s new policy will now cover kids up to 2 years old, in line with the US Food and Drug Administration’s approval decision earlier this year.

The change comes after Business Insider’s reporting highlighted families fighting their health insurers for access to the treatment, Zolgensma, which is the most expensive drug in the world. Parents have been especially frustrated because the drug needs to be given as soon as possible; damage from spinal muscular atrophy accumulates over time and can’t be reversed.

Read more: ‘Like we were being forced to gamble with our son’s life’: Health insurers won’t pay for a $2.1 million drug for kids, and parents say they’re running out of time

One of those families was the Olthoffs in Missouri, whose 11-month-old son, Isaac, had been told he didn’t have the right subtype of the disease and was too old for the treatment. Isaac is now eligible, dad Ben Olthoff said. 

“Maybe an hour and a half ago we got a call,” Olthoff told Business Insider. “We’re pretty happy.” 

Since then the family has been busy telling family and friends. As for plans to celebrate, they “haven’t made it that far yet,” Olthoff said. 

Following Business Insider’s initial story, reports by NBC News and The Wall Street Journal also featured the stories of kids with spinal muscular atrophy who were being denied the Zolgensma treatment. Earlier this month, the health insurer UnitedHealth reversed denials for two individuals with spinal muscular atrophy after the Washington Post wrote about their stories.

In addition to Isaac Olthoff, one other member covered by Aetna insurance will also now be eligible for Zolgensma, the Aetna spokesman said. 

“While the data on Zolgensma is limited, emerging information, expert opinions and the promise of the medication have led us to reconsider our approach,” an Aetna spokesman wrote in a statement to Business Insider. “We are broadening our coverage to fully align with the FDA-approved criteria for treatment, meaning the Olthoff family’s initial determination has been reversed.”

Zolgensma, which is made by Swiss drug giant Novartis, is a new type of cutting-edge, one-time “gene therapy” treatment that treats the disease at the genetic level. The fight over Zolgensma is just a preview of the battles to come as drugmakers increasingly develop promising drugs that could bear seven-figure price tags, Business Insider has previously reported.

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