Insurance Denies Newborn Twins Life-Saving Treatment for Fatal Genetic Disorder: 'Hard to Cope'

Shortly after welcoming Eli and Easton Reed on March 31, 2024, the family tells KMBC that the twin boys were diagnosed with spinal muscular atrophy.

The genetic disorder can "damage and kill specialized nerve cells in the brain and spinal cord," the National Institute for Neurological Disorders and Stroke explains.

While there is no cure, treatment includes "managing the symptoms and preventing complications."  

And for the St. Joseph, Missouri, twins, treatment included the medication Zolgensma — which the family says their insurance company stopped covering just one day before the twins were born.

"Time is of the essence with this ... since they don't have symptoms as of right now," the twins' mother, Amanda Reed, told KMBC. 

"It's best for them to receive this treatment now. because once symptoms start, it's un-reversible. So, time is of the essence, but we are still trying to explore all of our options."

Out-of-pocket costs for the medication are "between $1 million and $2.5 million per child, a daunting amount that we are striving to secure through insurance appeals and your continued support," a GoFundMe established to help them pay for the medication explains.

Zolgesnsma is a one-time treatment that "targets the genetic root cause of spinal muscular atrophy," the website says, "stopping the progression" of the disease.

KMBC 9/Youtube

As the GoFundMe shared, the family's insurance company "called an emergency meeting to review all of the information to decide whether or not they will allow their insurance to cover the gene therapy the boys need."

But on April 26, the board denied their appeal, the GoFundMe says, leaving the family to pay for the life-saving therapy themselves.

"I'm holding my heart in my hands," the twins' father, Austin Reed, told KMBC.

"The fact that their life is in somebody's else's hands, whether they get this treatment or they don't, you know, then that's somebody else's choice and that's hard to cope with that right now."

Without treatment, the twins' outlook is dire.

"Patients less than six months of age at disease onset will never sit independently and will likely to die of respiratory failure before two years of age," the National Library of Medicine says.

And as the Cleveland Clinic says, infants with type 1 SMA  — which means symptoms appear within the first 6 months of life — "usually die before their second birthday."

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