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.

Dystonia Research

National Institutes of Health---The federal government commits significant resources towards biomedical research activities through the National Institutes of Health (NIH). Certain NIH Institutes conduct dystonia research, including the National Institute of Neurological Disorders and Stroke (NINDS), the National Eye Institute (NEI), and the National Institute on Deafness and Other Communication Disorders (NIDCD).

Congress funds NIH on an annual basis, and NIH's ability to expand and advance the dystonia research portfolio depends on the willingness of Congress to provide the Institutes with meaningful funding increases. For Fiscal Year 2010, DMRF joins the larger medical research community in calling on Congress to provide NIH, NINDS, NEI, and NIDCD with a 7% increase in funds.

Department of Defense---The Department of Defense (DOD) supports biomedical research through the DOD Peer-Reviewed Medical Research Program. However, unlike NIH, which funds any meritorious research opportunity, the DOD program only funds research into conditions that are deemed eligible for study. And Congress decides which conditions are eligible for study each year.

There is a well established link between the suffering of a traumatic brain injury (TBI) and the onset of dystonia. TBI remains a serious health threat to the members of our armed forces, and subsequently, the prevalence of dystonia is increasing amongst our veteran population. To better understand the mechanism of the TBI-dystonia connection, DMRF urges Congress to add dystonia to the list of conditions deemed eligible for study through the DOD Peer-Reviewed Medical Research Program.

Care for Dystonia Patients

Follow-on Biologics---Millions of Americans, including 300,000 individuals with dystonia, rely on biologic products as treatment options to save or improve their lives. Biologics products are derived from complex living organisms and in the case of dystonia, the treatment is strategically placed injections of the neurotoxic protein, botulinum toxin.

Congress is currently considering diverse proposals to establish an approval pathway that would allow for the creation of generic or "follow-on" biologics, similar to how patients have access to both generic and innovator drugs today. To ensure that such an approval pathway places appropriate emphasis on the safety of follow-on biologic products, DMRF supports the bipartisan proposal put forth by Congresswoman Anna Eshoo (D-CA-14th) and Congressman Joe Barton (R-TX-6th), the Pathway for Biosimilars Act (H.R. 1548). Many risks to patient safety can arise during the development or use of a follow-on biologic product and H.R. 1548 contains strict safety standards, including specific provisions on toxins, to mitigate these risks and ensure the overall safety of follow-on biologics.

Medicare Physician Reimbursement---Medicare reimburses physicians for the services they provide to Medicare program beneficiaries on the basis of a fee schedule. By law, the Center for Medicare and Medicaid Services (CMS) must update this fee schedule each year by using a formula known as the sustainable growth rate (SGR) system. Since 2003, the SGR has calculated a reduction in the reimbursement rate for physicians, and Congress has been forced to intervene legislatively through a series of short-term patches to keep these reductions from going into effect.

If the current SGR reductions were to take effect, physicians would receive a decrease of approximately 20% in their reimbursement rates for treating Medicare beneficiaries. This situation would create a serious patient access to care issue as more and more physicians would decide not to treat Medicare patients. Furthermore, the current solution of short-term patches is time consuming for Congress and does little to address the uncertainty felt amongst medical providers about future reimbursement rates. The DMRF encourages lawmakers to work closely with CMS to find a comprehensive, permanent solution to this persistent problem which maintains access to care for all Medicare program beneficiaries.

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