Hi, I’m Liz Kennerley I’m also a mitochondrial disease patient and volunteer federal health policy lobbyist. My primary focus will always be rare disease legislation. However, in order to completely advocate for the 1 in 10 Americans with a rare condition other areas of health policy had to become a priority. Such as, protecting Medicaid, Medicare, CHIP, Obamacare, and most importantly, the countless of us with a pre-existing condition. On the other side of chronic illnesses involves ensuring the FDA and NIH continue receiving strong government funding. It is impossible to treat, nevermind cure, or get therapies approved for what we do not understand. I strongly support and advocate for rare disease-specific bills, such as OPEN ACT, Newborn Screening Reauthorization Act, Medical Nutrition Equity Act, and Advancing Access to Precision Medicine Act. Unfortunately, these bills did not survive the 115th Congress. However, I am thrilled despite plenty of distractions, the Newborn Screening Reauthorization Act passed in the House of Representatives earlier this week and our Senate reintroduced it just days before. While the House reintroduced Medical Nutrition Equity Act on May 2, it faces different challenges. As I’ve told those on Capitol Hill multiple times, [Non-health] bills can be stalled, disease processes can’t be. There are plenty of political distractions, but we can’t press pause on diseases while other issues are going on in the halls of Capitol Hill. As happened last year with the Farm Bill. When I’m mad or frustrated, I advocate. My very first lobbying experience was with the United Mitochondrial Disease Foundation (UMDF). I have since included Dysautonomia International, Biotechnology Innovation Organization (BIO), National Organization for Rare Diseases, Rare Disease Legislative Advocates, as well as Rally for Medical Research. While the legislative priorities are to help patients like all of us, the angle, legislation, and discussion are different each time. On the Hill, I have advocated alongside pharmaceutical CEOs, scientists, doctors, and patients. (Including, a fellow WEGOHealth Award Nominee.).
Elizabeth's Mitochondrial disease poses challenges for her every minute of every day. Still, she brings an indefatigable intensity to advocating on behalf of all patients with rare diseases online and in the halls of Congress. Her good cheer combined with her dogged determinism makes her a formidable force. — James
I’m a Patient Leader