NEED HELP WITH ADVOCACY IN YOUR STATE?
Visit our State Advocacy Resource Page
– Scroll down and review the UMDF Legislative Tracker to see all state and federal legislation that impacts the Mitochondrial Disease Community.
– Scroll down for the UMDF Advocacy Tool Kit and meeting preparation sheets should you schedule a meeting with elected officials.
– Can’t find what you need? Contact UMDF via email or call 888-317-8633
REMEMBER — We can only help support statewide efforts that you tell UMDF about. Let us know about any pending legislation you secured or bills that need state and community support. With that information, we can help mobilize the entire community in your state through eblasts and other ways to garner support and help you be successful!
UMDF IS WATCHING THE FOLLOWING STATE LEVEL LEGISLATION
Make sure you take action in the UMDF Advocacy Action Center on state issues that apply to you!
Check back for the introduction of new bills for the 2019-20 session.
UMDF LEGISLATION TRACKER
Use this tool to review and research important state and federal legislation for our community.
Share your voice for our community during “Awareness Week”!
Make sure you visit the UMDF Advocacy Action Center and let your voice be heard on these important issues!
This bipartisan legislation was introduced by Congressman. Andre Carson (D-IN) and by Congressman Ryan Costello (R-PA) on Rare Disease Day, February 28, 2018. As patients and caregivers, we find it incredibly difficult to find a way to get an accurate diagnosis or treatment. it expired on December 31, 2018. We will let you know when it is re-introduced and how you can support.
The RARE Act will help our community and 10 million Americans nationwide who are impacted by rare disease. It will enhance an existing and successful program of the National Institutes of Health (NIH), the Rare Diseases Clinical Research Network. This unique Network is made up of 21 research ‘centers of excellence’ studying rare diseases in an interdisciplinary way, working with patients and others on clinical studies and other research.
HR 5062 – Advancing Access to Precision Medicine Act
Rep. Eric Swalwell (CA-15) introduced the bipartisan Advancing Access to Precision Medicine Act, to push forward use of genetic and genomic testing to improve and save lives. The bill’s original cosponsors are Rep. John Shimkus (IL-15), Rep. Scott Peters (CA-52), Rep. Erik Paulsen (MN-03), and Rep. Juan Vargas (CA-51). This bill expired on December 31, 2018. Check back and we will let you know if it is to be reintroduced.
Innovation in genomics has presented new opportunities to diagnose and treat genetic disorders most rare diseases, as well as to predict predisposition to a disease. Genetic and genomic tests have the potential to further the emerging field of precision medicine – the customization of healthcare, with medical decisions, treatments, practices, or products tailored to the individual patient – and to cut health care costs by allowing better diagnoses and consideration of preventive measures.
But barriers including the lack of insurance coverage and inability to see relevant health professionals often impede access to genetic and genomic testing. The opportunity for a healthier America will be limited in the future unless patients have affordable access to such testing. With last year’s enactment of the 21st Century Cures Act – which streamlines the Food and Drug Administration’s drug and medical device approval process, and advances the Precision Medicine Initiative and Cancer Moonshot – we must do more to ensure innovative technologies are used effectively.
The Advancing Access to Precision Medicine Act would direct the Department of Health and Human Services to enter into an agreement with the National Academy of Medicine to develop recommendations on how the federal government may reduce barriers to the utilization of genetic and genomic testing.
The bill also would let states to apply for an exception to the federal medical assistance percentage rate (FMAP) to provide whole genome sequencing clinical services for certain children on Medicaid who have an unresolved disease that is suspected to have a genetic cause. The purpose is to study whether such services help settle a child’s diagnostic odyssey, improve clinical outcomes, and ultimately reduce program expenditures.