Big news for those living with LGMD! Instead of the generic “Other Muscular Dystrophy” diagnostic code, those living with LGMD are one step closer to having diagnostic codes that match their diagnosis. Earlier this week, the Centers for Medicare and Medicaid Services proposed to finalize several new codes for the LGMD. These codes will likely be fully finalized in June, and we expect their full implementation for use starting in October.

What are the proposed changes? Previously, those diagnosed with LGMD, and one of the 34 LGMD subtypes, would be assigned the “other muscular dystrophy” diagnostic code. Once this proposal is final, all individuals with LGMD will at least be assigned an LGMD diagnostic code with some (those with LGMD types 2A, 2B, 2D, 2E, and 2L) even receiving a subtype-specific code. 

Was this everything we wanted? In short, no. We, along with our partnering patient organizations, clinicians, and other key stakeholders, also requested subtype-specific codes for additional LGMDs, including LGMD type 2i. It does not appear that the Federal Government is ready to move forward with these requests at this time. Still, for those without a subtype-specific code, an LGMD-general code will still be much better than the currently used “other muscular dystrophies” code. 

Why is this important? Though this change might seem small and technical, when implemented, it would have significant benefits for the LGMD community, from potentially shortening the diagnosis timeline patients face, to delivering precise medical care, to improving clinical trials and future access to targeted treatments.

How did this happen? This milestone was the result of patients, physicians, and organizations all coming together and urging the CDC to make this change. Over 750 LGMD members from 49 states and Puerto Rico signed our petition asking for more specific codes. Also, thirty LGMD experts joined the effort along with many organizations.

Having medical codes accurately capture the various subtypes of LGMD may seem like a small adjustment, but it is one that will have a significant impact for people living with these conditions. It is a necessary change, as we are getting closer to the day when clinical trials will become available for those living with LGMD. And with these codes in place, we can better understand the size of the LGMD patient population, and more easily identify who is eligible for these potentially transformative therapies.

What comes next? MDA again will convene the LGMD advocacy organizations and leading medical professionals to plan next steps in ensuring these proposed codes are finalized and implemented by the medical community once available in October.

Thank you to everyone who raised their voice and made this happen! You truly make a difference.