By Rick Smith, HA Acting CEO
As a delegation from the Hydrocephalus Association heads to Washington D.C. to participate in the September 23rd Day of Testimony, we thought we would provide you with a complete update of our advocacy efforts. First, we have just completed an in-depth analysis of investments in hydrocephalus research by the National Institutes of Health. The good news is that spending has tripled since we began our advocacy efforts in late 2004. The bad news is that with less than $10 million spent in 2010, the dollar investment per affected person is well below what it should be given the estimated 1 million Americans that suffer from the condition.
ARRA = American Recovery and Reinvestment Act of 2009
Given current budget pressures and the pressure to reduce the national deficit, hydrocephalus research spending is likely to go down in 2011 and 2012.
These facts emphasize the importance of our work to make various branches of the federal government understand the magnitude of the plight of those who suffer from hydrocephalus. The Day of Testimony, our visits with senior staffers on various committees, and our relationship building with the leadership in the National Institutes of Health are critical components to a long term strategy to increase government investment in hydrocephalus research. We have updated our advocacy pages to reflect the breadth of our current programs and to highlight our recent accomplishments. We are thrilled to share with you a letter written by Representative DeLauro to NIH Director Francis Collins, M.D, Ph.D.; and announce the appointment of our Chairman Paul Gross to the Advisory Council of the National Institute of Neurological Disorders and Stroke.