Legislation that mandates more support for hydrocephalus research is a challenging objective in the current budget climate. HA’s approach in the past has been to seek report language from the Appropriations subcommittee on Labor, Health and Human Services calling for more support. With the passage of our first Congressional Resolution calling for more support of hydrocephalus research in 2007 — we pushed for supportive language of hydrocephalus research in the 2008 Labor Health and Human Services Appropriations Bill, which includes the NIH budget.
Specifically, the report language encourages NIH to “…significantly strengthen funding for hydrocephalus research along with actively soliciting grant applications based on the findings from the workshop. The Committee also encourages National Institute of Neurological Disorders and Stroke (NINDS) to seek opportunities to collaborate with other institutes and offices at NIH… [and] to support research collaboratively in epidemiology, pathophysiology, disease burden and improved treatment for hydrocephalus.”
Report language is a key avenue for members of Congress and their constituents to influence the ways federal agencies, including the NIH, spend federal funds. Report language does not have statutory force, meaning departments and agencies are not legally bound by their directives. These documents do, however, express congressional intent and executive branch departments take them seriously. In addition to report language, we have worked with Representative Rosa DeLauro, a ranking member of the Labor Health and Human Services subcommittee, to further emphasize the importance of NIH attention to hydrocephalus research. You can read Representative DeLauro’s recent mail to NIH Director Francis Collins by clicking on this link.
With guidance from our legislative contacts, the Hydrocephalus Association has developed an advocacy strategy pronged multi-faceted legislative program aimed at increasing support and funding for hydrocephalus research. The strategy includes both short and long term activities, outlined below:
- Seek a Distinct Category for Hydrocephalus at NIH: our goal is tocreate a category for hydrocephalus at NIH to better track grant dollars. Toward this goal we were pleased to have Representative Rosa DeLauro, ranking member of the Labor, Health, and Human Services and Education Committee, send a letter to NIH outlining the need for “significant expansion of NIH’s current efforts to establish broader collaborative research efforts into the incidence, causes of and treatments for hydrocephalus.” We are seeking to learn how we might have more directive language in future bills.
- Explore & Tap Existing Streams of Resources: We are working to identify existing streams of resources that can be tapped for funding hydrocephalus research, including Traumatic Brain Injury (TBI) funds at the Department of Defense.
- Develop a Legislative Strategy to Fund Research: We have begun working on a legislative strategy with a goal of developing legislation that would assure a greater federal commitment to hydrocephalus research. Once we have an outline for a legislative approach, we plan to aggressively pursue Members of Congress for their support. This legislation can serve as a rallying point for HA members and a pressure point to enlist the support of co-sponsors for legislative initiatives in the future.
- Participate in “A Day of Testimony”: In September, which has been designated as National Hydrocephalus Awareness Month, HA is working with the Pediatric Hydrocephalus Foundation and other organizations, including the Pediatric Hydrocephalus Foundation, on the planning and organizing of A Day of Testimony on Capitol Hill. Our goal will be to educate national legislators, and their staffs, on the need to devote more resources to hydrocephalus research. Our delegation will be led by Board Chairman, Paul Gross, with other HA speakers including Jenn Bechard (HA Staff), and Michael Williams (HA Medical Advisory Board). The day will create a backdrop for our other advocacy work described above.
- Climbing the Hill for a Cure: at the 2012 HA Conference, participants will converge on Capitol Hill to meet with legislators and their staffs to discuss the important need to invest greater resources in hydrocephalus research.
- Teens Take Charge: Teens Take Charge is an ongoing program to teach teens to become self-advocates both with health professionals and with their legislators. The program provides fundraising opportunities and trainings so that teens can be an effective force in making their stories heard with their Representatives.