The Hydrocephalus Association’s advocacy strategy spans a broad range of activities from local, grassroots awareness efforts such as our WALK program, to state level efforts to establish hydrocephalus awareness days/months, to our federal efforts which focus on research programs at the National Institutes of Health (NIH) and legislation with Congress. Our advocacy efforts aim to:
- increase awareness of hydrocephalus by our elected officials, and
- increase the amount of money that the federal government spends on hydrocephalus research.
The Hydrocephalus Association is focused on three main goals:
- Engage the Department of Defense in hydrocephalus research for veterans with Traumatic Brain Injury (TBI).
- Increase funding for hydrocephalus research at the National Institutes of Health (NIH).
- Partner with the Department of Health and Human Services (DHHS) on a NPH Public Education Campaign.
Click here to see how you can get involved in advancing these goals. [LINK TO ACTION NETWORK]
Goal 1 Overview
Engage the Department of Defense in hydrocephalus research for veterans with Traumatic Brain Injury (TBI).
The Department of Defense operates the Congressional Directed Medical Research Programs (CDMRP) to “find and fund the best research.” The CDMRP administers the Peer-Reviewed Medical Research Programs (PRMRP) and this program, created in 1999, is focused on providing “support for military health-related research of exceptional scientific merit.” Currently, the PRMRP funds research in 25 areas for which researchers can solicit funding. The goal of the Hydrocephalus Association is to get hydrocephalus included on the list of conditions eligible to receive research funding would increase the amount of money that the federal government is eligible to be spent on hydrocephalus research.
LATEST ACTION: On Thursday, July 17th, the Senate Appropriations Committee marked-up the FY 2015 Appropriations Bill for the Department of Defense. The report language that accompanied the bill included hydrocephalus as a condition eligible to receiving PRMRP funding, as well as, additional language on the importance of funding hydrocephalus research.
NEXT STEPS: The current fiscal year ends of September 30th, and Congress will need to pass a funding bill in order to keep the government running. While it is anticipated that Congress will pass a ‘Continuing Resolution’ to fund the government through the general elections in early November. They will then come back to session and work on a more comprehensive funding bill, which we hope will include our hydrocephalus language.
RELATED INFORMATION: See pages 252 and 257 of the Department of Defense Appropriations report to see the actual language: http://www.appropriations.senate.gov/sites/default/files/hearings/Defense%20Report%20CRPT-113srpt211.pdf]
Goal 2 Overview
Increase funding for hydrocephalus research at the National Institutes of Health (NIH).
The National Institutes of Health currently provides $5-7 million annually in research funding for hydrocephalus. It also raises the awareness on the condition of hydrocephalus. The goal of the Hydrocephalus Association to see increase this funding by four times this current amount – to approximately $20-30 million annually – to allow for a significant expansion of their hydrocephalus research program.
LATEST ACTION: On June ?, the Hydrocephalus Association took part in INSERT LANGUAGE on NPH ….I NEED INFORMATION ON THIS. PAUL and DAWN(?) WENT TO THIS
NEXT STEPS: The Hydrocephalus Association is committed to ensuring that NIH delivers on its promised outcomes of this convening and is continuing the conversation and remaining engaged in this effort.
Goal 3 Overview
Partner with the Department of Health and Human Services (DHHS) on a NPH Public Education Campaign.
DHHS regularly funds and delivers public education programs on a variety of disease management issues. Some notable examples include the It’s Only Natural (breastfeeding) campaign, National Breast and Cervical Cancer Early Detection program, and the Heart Disease and Stroke Prevent state grant program. The Hydrocephalus Association would like to see an the federal government invest in a public education campaign that would be focused on appropriately screening for Normal Pressure Hydrocephalus (NPH).
LATEST ACTION: The Hydrocephalus Association is working with strategic partners to determine the best path forward.