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.
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 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.