We here at the Hydrocephalus Association (HA) spend a lot of time talking about the work we are doing to fund research, as well as all the work we do to support patients and families affected by hydrocephalus. There is another part of HA’s mission that, frankly, we don’t talk about enough: advocacy.
HA is an advocate for the hydrocephalus community on many fronts:
advocating for more public funding of research on the causes, treatments and potential cures of hydrocephalus; advocating for better quality of life for hydrocephalus patients; advocating for greater awareness of the condition; and advocating for more attention within the medical community about the need for research on the condition.
With the move of our headquarters to the Washington, D.C., area last summer, we have greatly enhanced our advocacy work. HA staff is a regular participant in meetings with NIH, FDA, HHS, and other government agencies. We also have regular visits with our Congressional leaders. We are active members in a number of coalitions (the National Health Council, Research!America, the Health Research Alliance, and others) to help maximize our reach and effectiveness.
For example, just recently HA joined the fight in Washington, D.C. to help preserve valuable health care research dollars. With the across the board government funding cuts – or sequestration –already in effect, NIH stands to lose $1.6 billion in federal funding this year. That’s why HA has cosigned, along with other patient advocacy groups, several letters to Congress to preserve federal funding for NIH. Here is a sample of one of those letters: Sequestration Letter.
As the Senate recently moved forward with another stop-gap spending bill, HA urged Congress to restore some of the cuts to NIH to help ensure research continues to move forward. The Senate bill, now signed into law, provides $71 million more in funding for NIH, compared to the House bill. The added funds are helpful, but do little to offset the $1.6 billion in pending cuts.
At the same time, President Obama announced that he is proposing $100 million in federal research dollars toward a brain mapping initiative that will ultimately lead to better treatment options for many brain conditions, including traumatic brain injuries, Alzheimer’s disease, and stroke. Many details about the initiative, called “BRAIN” (short for Brain Research through Advancing Innovative Neurotechnologies), are still to be discovered, but we do know that the President seeks to involve multi-disciplinary researchers in work to unravel the mystery of the structure, function, and development of the brain, arguably the one organ we know the least about. The Administration is also looking for private firms – companies, research universities, foundations, and philanthropies – to join in the initiative in some way. Those already lined up who are going to contribute to the BRAIN Initiative include:
- $60 million annually to the Allen Institute for Brain Science to pay for research on how brain activity leads to perception, decision-making and ultimately action.
- $30 million annually to the Howard Hughes Medical Institute to pay for research to develop new imaging technologies and understand how information is stored and processed in neural networks.
- $4 million annually for 10 years to the Kavli Foundation to pay for research to provide the knowledge for addressing debilitating diseases and conditions (specific diseases/conditions not named)
- $28 million to the Salk Institute for Biological Studies to produce a sophisticated understanding of the brain, from individual genes to neuronal circuits to behavior.
There is no better time for HA to be here in DC, working on behalf of patients and their family members, despite (and maybe because of) the fiscal challenges consuming our country’s policy makers.