Legislative Priorities
The mission of the DMRF is to advance research for more treatments and ultimately a cure for dystonia, to promote awareness and education; and to support the needs and well being of affected individuals and families. In keeping with the mission, the DMRF is focusing its advocacy efforts on the following primary efforts.
Advocates meet with legislators locally and in Washington, DC.
To continue to make advancements in dystonia research, Federal support is needed for the National Institutes of Health (NIH). The DMRF urges Congress to be vigilant in its funding for the NIH and its subordinate research institutes that conduct dystonia research:
- National Institute of Neurological Disorders & Stroke (NINDS)
- National Institute of Child Health and Human Development (NICHD)
- National Institute of Deafness & Communication Disorders (NIDCD)
- National Eye Institute (NEI)
Access to Dystonia Therapies
DMRF urges Congress and the Centers for Medicare and Medicaid Services (CMS) to preserve access to necessary medications and therapies for dystonia patients.
- The Medicare Modernization Act assured an adequate reimbursement rate for therapeutic botulinum toxin injections for calendar years 2004 and 2005, but the planned CMS competitive bidding proposal creates a great deal of uncertainty for future rates. DMRF is also concerned about the reimportation of injectable drugs and urges an exemption for the reimportation of injectable orphan drugs.
- In addition, the DMRF urges the CMS National Coverage Policy to provide inclusion of the electrical nerve stimulation procedure (as it relates to deep brain stimulation provided by an implanted stimulator device) whenever it is deemed medically necessary. Currently, deep brain stimulation (DBS) provided via an implanted deep brain stimulator is subject to Medicare coverage at the discretion of the insurance company.
Genetic Non-discrimination Legislation
The DMRF calls on Congress to pass the Genetic Information Nondiscrimination. The Senate has already unanimously passed S. 306, introduced by Senator Olympia Snowe in February, 2005. The House must now pass its companion bill to the Senate’s genetic nondiscrimination legislation. Congressional action is essential to ensure that Americans will not be discriminated against because of their genetic information.
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