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Woman fights for son's treatment after losing brother, uncle to rare disease

Jamie Sukko of Eugene and her son, Odin (SBG)

EUGENE, Ore. -- A state health panel has decided Medicaid will not fund the drug Exondys-51, a medication to help those suffering from the rare disease.

It may not affect many Oregonians, but it means the world to a Eugene mother and her young son.

A State Health Panel is in charge of deciding which drugs are covered under Oregon Medicaid. According to Oregon Health Authority, their Health Evidence Review Commission makes the decision. Contrary to what you might think, FDA approval of a drug does not guarantee it will be okayed by this state panel.

That played heavily in a recent state decision to deny Medicaid coverage of the drug, Exondys-51. “The problem we had with this drug is that the evidence that's been developed so far is what we call very immature and, in years past it would not pass an FDA approval. The FDA lowered its standards to make the drug available," said Kevin Olson, M.D. Co-chair of OHA’s HERC.

Olson goes on to say that those standards don’t pass OHA’s standards, saying there needs to be more evidence.

Exondys-51 is a drug that helps those suffering the rare disease Duchenne Muscular Dystrophy.

RELATED | 'The only hope we have': Mother wants Oregon Medicaid to cover $300K drug for rare disease

"What's happening to him right now, his muscles are scarring, deteriorating," said Jamie Sukko, who is no stranger to this rare disease.

Her brother and uncle both died from it, and her son, Odin, is just starting to show signs.

It’s a rare disease - so rare that only a handful of children suffer from it in Oregon.

"The boys, they're warriors; they don't let Duchenne stop them and they keep going. Really strong, strong boys," Jamie says.

There’s no cure, but there is a drug she believes will help Odin: “It's not going to cure him and he won't be running any marathons, but my brother stopped walking at 11 and kids on this drug, we're talking 15 to 18 years old, they're still walking. That's just amazing."

Exondys-51 is the only FDA approved treatment for this muscular disease. Last week, HERC decided Medicaid in Oregon will not cover Exondys-51.

Without coverage, the price tag is $300,000 a year: "This is a lot of money, but this is a life. It's not just a price tag, this is a person; this is a little boy - an innocent little boy that doesn't deserve this disease whatsoever."

This is not Jamie’s first go around and despite this news from HERC. She believes he will get the medicine and says she won’t give up on that.

Jamie says the law firm Gibson Dunn & Crutcher stepped in to help Odin, doing the work pro bono. Their next step is appealing the Medicaid decision.

We spoke with HERC about what they called a hard decision: "They need something that works. It's just that the drug company has not yet proven that this drug works to a standard that we have in the Oregon Health Authority."

Olson says the decision for Oregon Medicaid to cover Exondys-51 will change if the state puts more money into the Medicaid program or if evidence in support of the drug improves.

Etiher way, one thing is clear, Jamie has no intention of giving up when it comes to Odin.

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