NIH Budget - Time for Action

Research in Primary Immunodeficiency 

There is urgent business going on in Washington. President Trump has requested significant cuts to National Institutes of Health (NIH) funding. He has proposed an $18 billion immediate cut for FY 2017. This represents more than half of NIH’s funding for the current fiscal year, and is more than the entire grantmaking budget. This graphic represents how the NIH spends its current funding:

For a more detailed breakdown, head to https://www.hhs.gov/about/budget/fy2017/budget-in-brief/nih/index.html

In addition to the sheer magnitude of the requested cuts, it’s important to note why the NIH is important to patients with PI. The NIH has one of the only comprehensive Primary Immune Deficiency clinics that takes adult patients. (https://www.niaid.nih.gov/clinical-trials/primary-immune-deficiency-clinic) They treat the rarest of the rare, assist with difficult diagnoses, and enable research across the country. They also fund the US Immunodeficiency Network (https://usidnet.org/), which is the only comprehensive registry of its kind allowing for basic, statistically-significant research of immune deficient patients. There is a lot of really simple stuff we don’t know about PI patients. What do we suffer from more commonly than the average population? What are some of the diagnostic patterns we see? The USIDnet allows for research into those issues in a way that’s not been sustainable before.

Those grants I mentioned? Most of the significant research projects about primary immunodeficiencies receive funding from NIH. Without NIH, there would be very little known about immune deficiencies and even fewer treatment options.

Contact your representative TODAY and let them know you support increased funding for NIH and urge them to vote against President Trump’s proposed cuts. Don’t know who your representative is? Find them here: http://www.house.gov/representatives/find/ . You can also find them on Facebook by using the new Town Hall function on the left side, towards the bottom. Enter your address and it will show you all the Public Officials that represent you.

What should you say to them? Tell them your story and how, as a rare disease patient, you depend on developments from the NIH to help improve the quality your care and your quality of life. Don’t be afraid to call their local offices near your home AND their DC offices to let them know that you support sustained and increased funding for the NIH.

Let us know if you have any questions or better yet if you have been helped by the Clinic at the NIH.

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Lisa MillerComment