2 Nonprofits Join Forces to Help Duchenne Patients Fight Insurance Denials

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by Larry Luxner |

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Two small patient advocacy groups, Little Hercules Foundation and Team Joseph, are stepping up their joint Duchenne Family Assistance Program (DFAP).

The expanded program, created last October, comes in response to the increasing rate of insurance company denials of life-extending treatments and medical devices for Duchenne muscular dystrophy patients.

Mindy Cameron, advocacy director at Little Hercules, said the Duchenne community historically has had difficulty getting coverage for equipment, medical procedures, and exams.

“But now that we have some new approved drugs for Duchenne, we’re having major issues,” Cameron told Muscular Dystrophy News Today by phone from her home in Carmel, Indiana. “The American healthcare system is set up so that every state and insurer has different policies. So families that are already struggling with this disease now have to undertake this complicated process to try to get coverage for the things they need.”

Cameron, whose 17-year-old son has Duchenne, said DFAP’s expansion involves the recent hiring of three full-time experts on insurance and Medicaid issues.

“We have never had a personalized, individualized system where people could get help for free,” she said. “Our people on staff understand the lingo, all the methodology, and all the ways to appeal and basically fight insurance denials.”

Little Hercules is based in Dublin, Ohio. It was established in 2014 by three moms — two of whom had sons diagnosed with Duchenne — who decided to host events to help fund research. Team Joseph, headquartered in suburban Detroit, was launched by Marissa Penrod after her son, Joseph, received his Duchenne diagnosis in 2008.

According to a joint press release, the two foundations have taken a “divide and conquer” approach to the challenge. Little Hercules assists with issues related to insurance, Medicaid, and social services. Team Joseph helps families obtain equipment and services not typically covered by insurance, as well as travel money for expert care and educational events.

“As the mother of a teen with Duchenne, I know what a difference tangible support can make to families living with the devastation of this relentless progressive disease,” Penrod said. “We are working with families in great need, bringing them some relief in the endless fight to get what they need to quite simply live their best lives.”

For example, insurance companies “almost always say no” to having a standing feature on a power wheelchair, which adds about $10,000 to the $50,000 cost of the wheelchair itself, Cameron said.

“Standing enables you to digest your food better, to put weight on your legs. It also helps prevent scoliosis,” she said. “There’s a wide range of reasons why standing is better than sitting 24/7.”

With the U.S. Food and Drug Administration’s approval of two therapies for Duchenne — Exondys 51 (eteplirsen) by Sarepta Therapeutics and Emflaza (deflazacort) by PTC Therapeutics — “we’re getting more and more denials” from insurers, Cameron said.

Both corticosteroids are very costly — yet their price for patients varies greatly.

“It all depends on the deal your insurance company negotiated with the manufacturer, what state you live in, how much your child weighs, and whether there are discounts or rebates,” Cameron said. “There is no consistency at all in what anyone pays. Patients are always the last to know these things.”

For more information about DFAP or to apply for free services, please click here.