INDIANAPOLIS (WISH) — Seven-year-old Jordan McLinn has Duchenne muscular dystrophy
Jordan’s family has been waiting for years for any kind of treatment to be approved.
And now they are crushed that even after the government’s approval, Anthem is denying coverage for a treatment that could be too expensive for families to afford on their own.
“Jordan is seven and a half, he’s kind of at the peak of his physical ability,” Jordan’s mother Laura McLinn said.
“His muscles are slowly starting to degenerate,” she said, “Teenagers are dying from this disease every day.”
The McLinn family and thousands of others had waited years for any treatment to be developed, until this year.
“On September 19th, our community got great news that the FDA had actually approved Exondys 51,” she said, “This is the first approved treatment in the history of this disease.”
But this week, Anthem insurance denied coverage of the drug.
“We get a few days to celebrate and then one of the largest insurance companies in the nation says oh sorry we’re going to decide now that you don’t need this,” McLinn said.
The company denied coverage because it reports the drug is “investigational” and not medically necessary.
A statement sent to WISH-TV on Friday stated that while the company empathizes with these families, it doesn’t feel the clinical evidence shows enough benefit.
McLinn is frustrated and extremely worried.
“Who are they to come in now and say sorry it’s investigational, it’s not medically necessary, what?” she said, “We’re talking about a terminal disease and this is a drug that slows the progression of that disease.”
While Jordan would not use Exondys 51 specifically, Laura said denying coverage would have detrimental impacts into future clinical trials and drug development.
Jordan is less than two weeks away for being screened for a clinical trial.
“Sarepta has to recoup their money, that’s how this works, if they’re not going to be able to sell the drug, Jordan’s not going to get his drug down the line either,” she said.
Below is a statement from Anthem Blue Cross and Blue Shield spokesman Tony Felts:
Anthem Blue Cross and Blue Shield recognizes the severity of Duchenne muscular dystrophy, and we empathize with the pain and suffering of those affected by muscular dystrophy.
We are committed to help ensure that our members have access to medical technologies that are safe and that are shown to improve health outcomes. In reviewing new drug treatments, Anthem relies on scientific evidence published in peer-reviewed medical literature.
The FDA’s label cites that a “clinical benefit of Exondys 51 has not been established.” In addition, as it reviewed the medical literature, Anthem’s Medical Policy & Technology Assessment Committee, a majority of whom are external physicians, determined that Exondys 51 failed to show it improves health outcomes. Therefore, it is not a covered benefit.
We eagerly await results of additional studies, including the FDA-required clinical trial to establish the drug’s effectiveness. We plan to review new information when it is made available.
For Anthem’s full medical policies, click here.