Family battles insurance company who refuses to cover son’s … – 13newsnow.com

13News Now Niko Clemmons has the story

Niko Clemmons, WVEC 10:22 PM. EDT March 29, 2017

YORKTOWN, Va. (WVEC) -- A Yorktown mother and her son are fighting for what they believe is right.

We first told you about Caden Bowers back in September when he got a chance to score a touchdown for Tabb Middle School.

It was the highlight of his life.

Caden was born with Duchenne Muscular Dystrophy, but he wasnt diagnosed until he was 5 years old.

Duchenne Muscular Dystrophy, or DMD is one of nine types of muscular dystrophy. The disease primarily affects boys, but in rare cases it can affect girls. Symptoms can start showing in people as young as three years old. In the early stages, DMD affects the shoulder and upper arm muscles and the muscles of the hips and thighs. That makes is hard to get up from the floor, climb stairs, or raise your arms.

Now Caden's mother says he is now in the middle of another difficult situation.

She says their insurance company is refusing to cover a breakthrough treatment.

A few months after being diagnosed Caden was one of 12 boys selected for a first-of-its-kind treatment for the disease. The progression of Cadens disease slowed because of the breakthrough treatment, Exondys 51.

His mom Beth Perez says they went from despair to hopeful overnight.

It's able to help him do things he wouldn't be able to at this age with the disease, Perez says.

In September, Exondys 51 was approved by the FDA.

However, their insurance company, Anthem BlueCross BlueShield has denied coverage for the drug, twice.

Perez says the insurance company is calling the drug investigational and experimental.

Obviously, it's not experimental because FDA approved it, Perez says. Insurance companies should be approving FDA covered drugs.

But there's still hope.

A decision whether to overturn the ruling is expected by a review board any day now.

Perez doesn't know what she'll do if they're denied coverage again because the drug is expensive, $300,000 dollars a year.

So that's why we pray they do the right thing and that they approve coverage for Caden and others who are fighting, Perez. From the moment he was diagnosed I fought for him and I will continue to fight for him.

Theres also a petition online, and Perez hopes to send a message to Anthem. You can find it here.

Before this year, there were no FDA approved treatment options available for Caden. This changed with Exondys 51 in September 2016.

This first-of-its-kind drug targets just a subset of an already rare condition, fewer than 1,500 patients nationwide have this rare form of the disease. DMD is diagnosed typically around age 4, but as early as age two. Local media are covering similar stories in other parts of the country a teen in upstate New York who was denied coverage just had the decision reversed after the story was reported.

Awareness needs to be made about what (Anthem) is doing, Perez says. It's greedy and unfair to these children who deserve a fighting chance.

2017 WVEC-TV

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