MDA’s 2021 Advocacy Plan

2021 is a new year: The country has a new administration, and a new Congress has been sworn in. What isn’t new is MDA’s commitment to working tirelessly in Washington, DC, to transform the lives of people living with neuromuscular diseases (NMDs).

Here’s a sneak peek at some of the issues we’ll be working on this year.

Access to care and therapies from day one

Early detection and intervention of neuromuscular diseases is critical in order to deliver adequate and appropriate healthcare. In 2021, we will advocate for:

• Improving and strengthening newborn screening by reauthorizing the newborn screening program and continuing to protect it from changes that may impede future research going forward
• Increasing the number of states that screen babies for both spinal muscular atrophy (SMA) and Pompe disease and working to gather the information necessary to add Duchenne muscular dystrophy (DMD) to the national list of newborn screening conditions
• Making permanent emergency improvements to telehealth policies in response to the COVID-19 pandemic
• Improving on the patient protections guaranteed by current law
• Ensuring access to genetic testing and genetic counseling services

Accelerating therapeutic development

We are committed to working with key stakeholders, including the US Food and Drug Administration (FDA), to help accelerate development of life-changing therapies. Specifically, we will:

• Advocate for innovative ways to accelerate therapeutic development and FDA regulatory review so patients can gain access to life-changing treatments sooner
• Advocate for FDA reforms during the agency’s user fee reauthorization process
• Continue our efforts to ensure that clinical trials for NMDs can continue throughout the pandemic

Empowerment and independence

MDA works every day to ensure that members of the neuromuscular community are able to learn, work, travel, and socialize without discrimination. This year, we will continue to advance policy changes that maximize our community’s access to key programs and services, including:

• Improving air travel for individuals with disabilities
• Ending workplace discrimination against people with disabilities
• Ensuring access to higher education for the NMD community

We have a lot to do in 2021, and we cannot do it alone. We need every voice advocating for these issues if we are truly going to have an impactful year. Join our grassroots network today and help us transform the lives of the more than 300,000 people across the country living with neuromuscular disease.

Want to learn even more about our 2021 plans? Check out our Advocacy Institute’s 2021 Advocacy Kickoff:

https://www.youtube.com/watch?v=K7-BZ5dk92k