Boy with rare genetic disease fights for treatment

Boy with rare disease fights for treatment

A 10-month insurance fight is finally over for a Twin Cities family.

Jonah Jacobson, 17, suffers from a genetic disease called Duchenne muscular dystrophy, and he's getting weaker by the day because his family can't afford his medication.

The drug that will improve his quality of life costs $300,000 per year without insurance.

The rare genetic disease Jonah was diagnosed with at age 5 causes progressive muscle weakness that generally gets worse in the first 20 to 25 years of life, and causes early death.

Jonah needs a wheelchair to get around, and he requires assistance to complete some basic tasks like brushing his teeth and going to the bathroom.

His stepmother, Shawnmarie, is his caregiver.

"I don't know what I would do without him," she said. "I don't know what his little brother and sister would do without him."

Now, his family has learned of a treatment for his condition. It's an FDA-approved drug called EXONDYS 51. But Jonah, who is covered through Medicaid, received two denial letters for coverage of the drug. Medicaid doesn't cover it for everyone -- they only cover it on a case-by-case basis.

On Wednesday night, though, his family got good news at a Department of Human Services hearing. Medicaid will pay for the medication he needs, as long as the treatment is performed in a hospital.

In a statement, the Minnesota Department of Human Services said, "Medicaid generally covers this drug. However, state law requires that medications administered by a physician need to be billed by the treating physician and not a pharmacist. This is to ensure drugs are handled properly. DHS routinely works with patients and doctors to resolve billing issues and ensure clients get the care they need."

Dr. Steven Koop with Gillette Children's Hospital, where Jonah goes for care, says DHS has not guaranteed that the hospital would be reimbursed by Medicaid if they buy the $300,000 drug for patients like Jonah. So the hospital says they sometimes try to get drugs through a pharmacy, like in Jonah's case. But per the DHS statement, Medicaid will not reimburse a pharmacist. 

"I think the conversation has to be not through us but between those who create and market the drugs and those who pay the bills," Koop says.

Jonah and his family have been fighting for this drug for 10 months. They just want the treatment right now, to prolong and enhance Jonah's quality of life.

"Me, I don't quite understand the whole situation, but I understand it's important for me and I can do all the stuff I like to do," Jonah says.

His family says they're pleased with the DHS decision and glad Jonah will be getting his treatment soon, but they feel the situation could have been resolved much sooner.

Dr. Koop released a statement Thursday saying that they appreciate that DHS has determined to cover this and other therapies that will positively impact the lives of patients.

© 2017 KARE-TV


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