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.
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.
In recent years, lawmakers have introduced numerous proposals to establish an approval pathway at the Food and Drug Administration (FDA) for generic biologic products to lower the cost of biologic treatments. DAN advocates continue working to educate legislators about the needs of patients who rely on botulinum toxin injections to ensure that congress ultimately supports legislative provisions which establish strict safety and efficacy standards for generic biologic products.
By law, the Center for Medicare and Medicaid Services (CMS) must update the rate at which it reimburses physicians for the services they furnish to Medicare beneficiaries on the basis of a mandated formula. This formula has returned significant reductions to the physician repayment rate in recent years and Congress has been forced to act through a series of short-term patches to offset the scheduled cuts. If these cuts were to take effect, many physicians would be reluctant to see Medicare patients and DAN advocates have been calling on Congress to work with CMS to identify and implement a long-term solution to this persistent problem.