Tufts researcher wins MDA grant to study SMA treatment access

Study will examine eligibility criteria across largest commercial plans, Medicaid programs

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by Mary Chapman |

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The Tufts Medical Center, a teaching hospital of the Tufts University School of Medicine, has been awarded a Muscular Dystrophy Association (MDA) grant to investigate patient access to treatments for spinal muscular atrophy (SMA) and other diseases.

The project, led by James Chambers, PhD, will evaluate access to crucial therapies among people with SMA, amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy, generalized myasthenia gravis, and Lambert-Eaton myasthenic syndrome. It will involve examining patient eligibility criteria across the nation’s largest commercial plans and state Medicaid programs.

Tufts was among five recipients of $109,065 in grants from MDA’s Advocacy Collaboration Grants program. The funded projects support the organization’s key public policy and advocacy initiatives, directed at empowering those with neuromuscular disorders (NMDs) such as SMA to live longer and more independently.

Other recipients include All Wheels Up, which seeks to test a wheelchair securement system for airplanes; the Cure Congenital Muscular Dystrophy, and the Oculopharyngeal Muscular Dystrophy Association, both of which will survey patients and caregivers to expand advocacy approaches; and the Cure Rare Disease, which will study Medicare and Medicaid coverage of gene therapies and other gene editing therapies.

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“With these grants, the Muscular Dystrophy Association is thrilled to contribute to innovative policy and advocacy initiatives at our partnering organizations that will hopefully lead to better treatments, care, and accessibility for the neuromuscular disease community,” said Paul Melmeyer, vice president of public policy and advocacy at MDA, in a MDA press release. “As a convener and leader for over 70 years in support of the neuromuscular community, MDA’s Advocacy Collaboration Grants program aims to facilitate impactful and cooperative advocacy projects and initiatives, since no individual organization can solve for every challenge or remove every barrier faced by individuals and families across the neuromuscular community.”

The grant program was established last year and accepted applications through Sept. 16. Applications were reviewed by a committee made up of MDA leaders, members of the neuromuscular disease community, and researchers and clinicians.

Applicants were required to provide at least one of the following:

  • Data to improve understanding of the experiences of the neuromuscular disease community, with the overarching goal of advancing MDA advocacy priorities
  • Opportunities for NMD community stakeholders to gather, virtually or in person
  • Programs or toolkits that seek to produce and train grassroots NMD advocates
  • Novel programs, campaigns, or initiatives that can quantifiably affect at least one advocacy goal of the MDA and partner organizations

The MDA is the nation’s leading nonprofit organization for those with muscular dystrophy, ALS, and associated neuromuscular diseases such as SMA, a genetic disorder that’s thought to affect between 10,000 and 25,000 people in the U.S.