This week, as part of World Mitochondrial Disease Week, UMDF President & CEO Brian Harman caught up with the offices of several members of Congress to talk about mitochondrial disease and the support we need from the federal government. We wrapped up each call with one quick fact – how many supporters lived in their local district, ranging from a few hundred into the thousands. Given that mitochondrial disease is a “rare” disease that affects an estimated 1 in 5,000 people, we heard a lot of surprise.
But it’s not just patients. It’s families, it’s friends, it’s neighbors. When we speak we our collective voice, we are that much greater. So today, as we wrap up World Mitochondrial Disease Week today, it seemed like a good time make one last ask.
In that vein, for this month’s advocacy alert, UMDF would like to take a look back at all we’ve accomplished over the last year and use this as an opportunity for our members to reach out to their Congressional representatives and reignite some of our most important ongoing efforts to advance mitochondrial disease awareness, research, and treatment.
Click on the below links to visit the UMDF Advocacy Center page for each.
Telehealth irrevocably transformed into an indispensable part of our healthcare system. It has been critical for mitochondrial patients to receive care in their homes and access specialists regardless of where they live. However, many of the flexibilities afforded under the COVID-19 Public Health Emergency are only temporary. In July, thanks in part to UMDF efforts, the House passed the Advancing Telehealth Beyond COVID-19 Act (H.R. 4040) by a vote of 416-12. This bill would guarantee many of these critical telehealth flexibilities through 2024. We encourage you to reach out to your Senators and ask them to pass this important piece of legislation as it continues to work on permanent telehealth reform.
Thanks to your efforts, the Medical Nutrition Equity Act (MNEA) is up to 96 cosponsors in the House and 22 cosponsors in the Senate. The Act would require expand coverage of medically necessary foods (including vitamins) for digestive and inherited metabolic disorders. Although these foods are essential for patients, they are often expensive and not uniformly reimbursed by all health insurance carriers, leaving many families to foot the bill, which can be substantial.
The Mitochondrial Disease Caucus, co-chaired by Representatives Jim McGovern (D-MA) and Brian Fitzpatrick (R-PA), currently has 33 bipartisan members of Congress and provides an important forum for members and their staff to learn about and advocate for mitochondrial disease and related issues. Having a robust Caucus speaks to the prioritization of securing federal support for cutting edge research into mitochondrial disease to gain new insights and develop therapies and cures.