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

Jackson Schultheis is now eligible for the spinal muscular atrophy treatment Zolgensma after his health insurer changed its policy.

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Jackson Schultheis is now eligible for the spinal muscular atrophy treatment Zolgensma after his health insurer changed its policy.
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Elissa Schultheis

  • Health insurers Aetna and Anthem 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.”
  • Also newly eligible for Zolgensma is 19-month-old Jackson Schultheis, who lives in Indiana and had previously been denied the therapy twice.
  • The policy changes 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 insurers Aetna and Anthem 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.

Anthem also revised its treatment policy this week. The health insurer is keeping its cutoff at 6 months old, but added a policy for kids who were slightly older at the time of the FDA approval and meet other criteria.

The changes come 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 sub-type of the disease and was too old for the treatment. Isaac is now eligible under Aetna’s new policy, dad Ben Olthoff said.

Isaac Olthoff, 11 months old, will be able to get the gene-therapy treatment Zolgensma under a new policy from Aetna.

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Isaac Olthoff, 11 months old, will be able to get the gene-therapy treatment Zolgensma under a new policy from Aetna.
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Ben Olthoff

“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.

Also newly eligible for Zolgensma is 19-month-old Jackson Schultheis, who lives in Indiana and had previously been denied the therapy twice.

Elissa Schultheis, her husband Jacob and their son, Jackson.

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Elissa Schultheis, her husband Jacob and their son, Jackson.
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Elissa Schultheis

The Schultheis family found out on Tuesday evening, when health insurer Anthem called his family to tell them Jackson had been approved. In an email on Wednesday, mom Elissa Schultheis described the day since as “busy and exciting.” Jackson is scheduled to get the treatment in late August, she 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.”

An Anthem spokeswoman said that “the policy was updated as a result of continued discussion about coverage criteria due to unique circumstances surrounding treatment of infants and children with SMA type 1 who were born prior to FDA approval.” Anthem did not answer Business Insider’s questions about how many children will now be eligible under the changed policy.

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.