MDA’s Focus on Better Access for Patients With Neuromuscular Disorders: Paul Melmeyer

WATCH TIME: 14 ­­minutes

“First, in listening to the community, what we have learned is that access to care is incredibly important [to patients]. Often, when accessing a neurologist, accessing a genetic counselor, or accessing a physical or occupational therapist, there are barriers placed in front of the community either due to insurance companies’ policies, or perhaps there are actual distance barriers. Sometimes it can be hundreds of miles for an individual with neuromuscular disease to actually travel to that expert neurologist…with that expertise.”

On March 19, the Muscular Dystrophy Association (MDA) will kick off its annual Clinical and Scientific Conference in Dallas, Texas. The meeting convenes the scientific and medical professional communities, as well as patients and advocacy groups, all in one place to offer an opportunity to share progress and align on addressing the challenges and needs of the various patient populations with neuromuscular disorders.

These issues can be tackled via a focus on policy, as Paul Melmeyer, the MDA’s vice president of public policy and advocacy, knows all too well. Changes in federal and state policy can help improve access to various healthcare services, clinical trial funding and enrollment, and to lift barriers that create difficulties for patients and physicians alike. In this vein, the MDA recently announced that Peter Marks, MD, PhD, director of the Center for Biologics Evaluation and Research at the FDA, will serve as the Keynote Speaker of the 2023 conference, where he will address the unique needs for drug development and regulatory oversight of gene therapies and other genetic medicines.

To find out more about the policy and advocacy focuses of the upcoming meeting, as well as what the MDA is doing to address these challenges, NeurologyLive^® sat down with Melmeyer. He spoke at length about the upcoming meeting and what attendees interested in policy advocacy can expect, what the patient community has told the MDA about their needs that policy can address, some of the ways the organization is improving clinical trials, and the latest on efforts to continue to gain ground in newborn screening across the United States.

Registration for the 2023 MDA Conference is now open! The meeting is set to be held at the Hilton Anatole, in Dallas, Texas, from March 19 to 22, 2023. To register and for more information, head to www.mdaconference.org.