The Dystonia Action Network (DAN) coalesces around issues of common concern to the entire dystonia patient community. Below are the current legislative priorities which are at the core of the DAN’s ongoing outreach and advocacy efforts.
The bulk of federally-supported dystonia research is conducted through NIH. Each year, DAN advocates call on Congress to provide NIH with meaningful funding increases so that the dystonia research portfolio continues to expand, advance our understanding of the disorder, and further efforts to identify improved treatment options and possible cures.
DAN Adocates are asking for the National Institutes of Health (NIH) to be be funded with at least $41.1 billion in FY 2020, a $2 billion funding increase. NIH coordinates with proportional increases for the various Institutes and Centers, particularly the National Institute of Neurological Disorders and Stroke. Investment in NIH research has led to improvements in our scientific understanding of dystonia and a meaningful funding increase will ensure current efforts can continue.
Unlike NIH, which funds meritorious medical research proposals in any area of study, the DOD’s Congressionally Directed Medical Research Program (CDMRP) only funds research into conditions that are specifically recognized by lawmakers. Traumatic brain injury (TBI) and other traumatic injuries can be catalysts for the onset of dystonia. As military personnel remain deployed, dystonia is becoming increasingly prevalent among combat veterans. More research is needed to understand the mechanism between combat injuries and dystonia. DAN advocates routinely reach out to their Members of Congress to ensure that they understand the importance of seeing that dystonia is recognized as eligible for DOD research funding.
DAN Advocates are asking that dystonia continues to be recognized as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) for FY20. The onset of dystonia can be associated with traumatic injury, such as traumatic brain injury, and important research efforts through the PRMRP are working to improve the lives of individuals, including veterans and active duty military personnel, affected by dystonia.
DAN advocates are working to educate legislators about the needs of patients who may be affected by changes through reform of the Affordable Care Act including:
- Prohibiting insurer discrimination against pre-existing conditions
- Allowing young adults to stay on their parents’ insurance until the age of 26
- Establishing out-of-pocket maximums for covered services
- Prohibiting annual and lifetime caps on insurance coverage
These protections have made it possible for chronic disease patients to obtain insurance coverage and protect them from stratospheric medical bills.