- Government programs that fund neuromuscular disease research fared well in the recent continuing resolution passed by Congress on March 21. The continuing resolution funds the government through the end of September 2013.
- Neuromuscular disease research is sponsored by several government agencies, including the National Institutes of Health, U.S. Food and Drug Administration, Centers for Disease Control and Prevention, and Department of Defense.
- The continuing resolution does not avert pending cuts caused by the sequester. MDA’s advocacy program “will continue to work to ensure that congressional appropriators understand the importance of this life-altering work … as decisions are being made about funding for fiscal year 2014.”
The news is generally favorable for many important government-funded neuromuscular disease research projects, in the wake of Congress’ recent passage of a continuing resolution funding the government through the end of September.
Most government operations, except those funded through the full-year appropriations bills, will be maintained at essentially the same level as fiscal year (FY) 2012. (The government's fiscal year begins on Oct. 1 and ends on Sept. 30 of the following year.)
Neuromuscular disease research projects are spread across several governmental agencies, including the National Institutes of Health (NIH); the Food and Drug Administration (FDA); the Centers for Disease Control and Prevention (CDC); and the Department of Defense (DOD).
- NIH and FDA: Both agencies received slight funding increases in the continuing resolution bill. These agencies fund basic, clinical and translational research into neuromuscular disease, as well as oversee the approval of new drugs, biologic products and medical devices.
- CDC: The funding bill maintained last year’s funding level for the CDC. This agency implements the muscular dystrophy program through the CDC National Center on Birth Defects and Developmental Disability (NCBDD), established by the MD CARE Act and the National ALS Registry at the CDC Agency for Toxic Substances and Disease Registries (ATSDR), established by the ALS Registry Act.
- DOD: One of the full-year appropriations bills to be included in the continuing resolution was funding for the DOD. Congress directed that FY2013 funding for amyotrophic lateral sclerosis (ALS) research be slightly increased and that funding be maintained at its current level for Duchenne muscular dystrophy (DMD). In fiscal year 2012, DOD funding for ALS research was $6.4 million, which will increase to $7.5 million in FY2013, and DMD funding held steady at $3.2 million.
"Halting our discovery momentum at such a promising time by reducing federal scientific funding would be a ‘worst-case’ scenario. And since that potential still exists, we are continuing to work to ensure that congressional appropriators understand the importance of the life-altering work being funded by the NIH, FDA, CDC and DOD as decisions are being made about funding for fiscal year 2014.”
Kennedy noted that the continuing resolution does not avert the pending deep federal budget cuts known as the "sequester," although it does give more leeway to agencies in deciding how to make those cuts.
MDA is working with Representatives Ed Markey (D-Mass.) and David McKinley (R-W.Va.), and a coalition of national patient advocacy organizations to convince Congress to give full funding to medical research in the next fiscal year.
“Raise your voice,” urged Kennedy. “Tell Congress to provide full funding to vitally important research in 2014!”