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Local teen battling rare brain disease will continue receiving medication for the next year

Local teen battling rare brain disease will continue receiving medication for the next year
Posted at 6:45 PM, Jan 24, 2020
and last updated 2020-01-24 21:45:01-05

Devin Dobroth is a teenager who enjoys the simple things in life and just turned 18-years-old on Monday.

"Getting to hang out with friends... just like going to the beach and surf and stuff is fun," Devin says.

But he hasn't been able to do much of that lately because 15 months ago, he was diagnosed with a rare brain disease called Superficial Siderosis.

"As of a month and a half ago, there was only 156 in the United States with this condition," says Sara Dobroth, Devin's mother.

The disabling and potentially life-threatening condition has made Devin suffer from major headaches, pain, and loss of vision, but with the medication Ferriprox he has been seeing improvements.

Which is why on Tuesday the news that the family's insurance company, Anthem Blue Cross, would no longer be paying for Devin's expensive medication was anything but a birthday surprise.

Without insurance, the medication would cost more than $6,000 a month.

Sara Dobroth says they submitted an appeal to the insurance company on Friday. Anthem had 30 days to respond, but they responded that very same day.

According to Dobroth, the insurance company agreed to pay for Devin's treatment through January of 2021. The Dobroth family will, however, have to revisit this again in a year if Devin still needs the medication.

As of Friday afternoon, Devin only had enough medication for 18 days.

"The message is that we need to get the medication for Devin but also to really shine light on the fact that the system is failed in a lot of ways and he is not the only one," Sara says.

KSBY did reach out to Anthem Blue Cross but they said they could not comment on the matter because of health privacy laws.

According to Dobroth, those with Superficial Siderosis were able to go to Canada in the past, but now treatment is no longer offered.