Advocacy Update: HA Points to Increased Funding but Calls for More

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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.

 

nih spending chart for hydrocephalus

* Data compiled from NIH RePORTER by the Hydrocephalus Association.

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.

4 Comments for : Advocacy Update: HA Points to Increased Funding but Calls for More
    • Kyle Bates
    • September 22, 2011
    Reply

    This report shows NIH spending, I am curious to see a breakdown of spending for 2010? What % of all funds raised goes towards research for a cure, 2) raising awareness and advocacy and operations. The last info I found was dated 2008
    Public support, education and advocacy 534,641

    Research 13,864

    Hydrocephalus conference 191,453

    Total Program Expenses: $739,958
    http://www.bbb.org/charity-reviews/national/health/hydrocephalus-association-in-san-francisco-ca-4210
    Charity Review of Hydrocephalus Association

    • Jennifer R. Ewing
    • September 22, 2011
    Reply

    Actually, if I’m reading that bar graph correctly, it would appear that spending has *tripled* since 2005. So, even if the spending levels do decrease in the next couple of years, we should still be significantly better off than we were six years ago (unless, of course, the budget is cut so drastically that it’s diminished back to pre-’05 levels, but I’m an optimist).

    • joanne
    • September 21, 2011
    Reply

    After having this condition for 45 years,maybe now as it is becoming into the limelite, getting my self taken care of won’t be so ridiculed as being all in my head — haha. It has really been a hard haul with the doctors and insurance never mind others that just don’t know better. Now as I tell people they ask questions. I need to keep learning more about my condition to pass the word now that I have something to back me up. Thanks.

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