Barriers to DMD Care Access and How Policy Change Can Support Patients: Dr Migvis Monduy

Migvis Monduy, MD, medical director of Neuromuscular and Movement Disorders Programs at Nicklaus Children's Hospital, discussed challenges in Duchenne muscular dystrophy (DMD) treatment access and how policy changes may support patients with DMD.

Migvis Monduy, MD, medical director of Neuromuscular and Movement Disorders Programs at Nicklaus Children's Hospital in Miami, Florida, discussed challenges patients with Duchenne muscular dystrophy (DMD) face when accessing treatment and how policy changes may support these patients.

In a previous interview, Monduy spoke to the most promising areas of research in DMD.


What challenges do patients face in accessing care and treatments for DMD?

That's a great question. I mean, [for] a lot of these patients, the care is so complex. The biggest barrie, [and] I think first barrier, is accessing centers and teams of physicians that are familiar with the condition, that are up to date on all the research and all the latest treatments, and that could provide that multidisciplinary care for the patient.

For a lot of patients that live in urban areas, it's not so much of a problem. But for the patients that live a little bit further out, there's the logistics of having to travel with a child that's in a wheelchair, and to be seeing all these doctors so frequently is a big burden on the families. It places a lot of financial burden, too, because families have to take time off work and lose productivity that way.

The other biggest burden now is with all these medications that are new and exciting, but are also very expensive, trying to work on getting insurance coverage for these medications in a timely manner. It's oftentimes a challenge for the families and the teams involved in taking care of these patients. There's a lot of paperwork and processes that have to go in place to get those medications approved and for them to continue to receive them over time.

What, if any, changes in health care policy could better support patients with DMD?

I think one of the biggest ones is for insurance companies to understand that accelerated approval still means approval, and not that it is experimental. Oftentimes, we find, as providers, prescribing these medications, that it's hard to get that point across, and many insurance companies will use the accelerated approval process to deny coverage for certain medications.

I think expediting the process for prior authorizations and all that goes into that, if there can be a centralized way of doing that in a more effective manner or some policy that can be created that all insurance companies will have to follow with a faster turnaround, that would be very effective. I know a lot of organizations are working on lobbying for this. And again, for payers to update their policies in a timely fashion and to keep up with the development of these drugs as well. Because oftentimes, the FDA will have the approval and you try to prescribe it, but it takes several months for payers to even understand what the drug is or what DMD is and to have that indication happen. It is certainly hard on families that are waiting and are looking to treat their child as soon as possible—they're racing against time.

It's really hard to be on that end of those conversations and those fights with payers sometimes. I think it's really going to take collaboration between policymakers and payers and physicians that are involved with and care for these patient populations to really work together and expedite these processes in the future.

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