A 19-year-old with muscular dystrophy has been fighting for years to slow the progression of his disease – but he’s being denied coverage by his insurance company.
Andrew Longwell was diagnosed with Duchenne Muscular Dystrophy on his sixth birthday. It’s a rare genetic disease that prevents the ability to build muscles and will eventually lead to the loss of mobility.
He lost his ability to walk when he was about 9 years old. He now uses a wheelchair.
Andrew and other patients fought for years to get the FDA a to approve a groundbreaking drug called Exondys 51. It’s not a cure, but the drug is designed to slow the progression of the disease.
FDA approval came in September. But Andrew’s hopes were crushed when his insurance company refused to pay for it.
“I’ve been waiting for this for so long, to have something that can help me – but then the Insurance company says I cant have it,” said Longwell. “I was devastated.”
Andrew says he was not approved to take the drug because he’s in a wheelchair.
According to Excellus BlueCross BlueShield, Exondys 51 will not be approved for patients who have already lost the ability to walk, because it is still unknown if patients with more advanced disease and greater muscular deterioration would benefit from the treatment.
The patient must be ambulatory with a baseline unassisted 6-minute walk test of at least 200 meters. Andrew says he took the test but was unsuccessful.
“We feel that its wrong, and we feel that I should be able to get it too, and the others boys that are being denied should be able to get it also,” said Longwell.
Andrew is now petitioning Excellus’s CEO Christopher Booth, saying that the decision to deny his coverage is discriminatory. He is asking that Excellus treat Duchenne patients in wheelchairs equally as those who can walk.
Despite it all, Andrew remains a typical teenager who loves everything from hockey to video games – and he’s not letting this latest challenge keep him from speaking out.
Andrew has created a change.org petition for his cause, which you can view here.