Update from April 2016 Muscular Dystrophy Coordinating Committee (MDCC) Meeting

It's been a rough few weeks for this community, but our efforts to shape and reshape access barrier issues for our community continue -- and last Wednesday we took a giant leap forward. It was a pivotal day that I was proud to be a part of!

The federal intra-agency Muscular Dystrophy Coordinating Committee (MDCC) held its semi-annual meeting in Bethesda, Maryland on Wednesday, April 27th. The agenda included presentations from PPMD's Abby Bronson on our recent Pulmonary Outcome Measures Workshop and Jane Larkindale on the PPMD-led Critical Path Initiative for Duchenne.

The afternoon session was dedicated to a discussion about ‘Patient Access to Care, Services, and Medical Equipment’ that I had the honor to co-chair. I opened the session by providing an overview of the access and resource barriers frequently encountered by members of the muscular dystrophy community.

The afternoon also included eligibility presentations by representatives from the Social Security Administration (SSA) and the Centers for Medicare and Medicaid Services (CMS). Federal agency representative members of the MDCC engaged in robust discussion about resource gaps and therapy access barriers and the discussion yielded the creation of an intra-agency workgroup to focus on the design of a federal demonstration project that could begin to address key access barriers.

The workgroup will be led by PPMD MDCC representative Brian Denger and myself, and will include partners from MDA, other advocacy organizations and relevant federal agencies such as SSA, CMS, and the Department of Education.

Much more to come as this project takes shape!

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Comment by Brian Denger on May 3, 2016 at 9:05pm

The MDCC focuses on activities concerning the 9 known muscular dystrophies, not just DMD.   Members from federal agencies that provide funding or services for people affected by muscular dystrophy and volunteer advocacy organization make up the committee.  

To learn more about the MDCC and the MDCC Action Plan for the muscular dystrophies, visit the following link: https://mdcc.nih.gov/action_plan/2015-action-plan-talking-points.pdf

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