After lobbying during Rare Disease Week on Capitol Hill a couple of weeks ago, I was convinced we were pretty successful with our congresspersons in showing them how vital NIH Funding was to the rare disease community. The NIH is where we get our clinical studies from because frankly, what’s in it for big companies to treat just a few of us? It’s also a place we can go for “last resort” treatments.
We lobbied not just for NIH funding to stay in tact, but for funding to increase. It’s a bipartisan issue– rare disease needs more. Whether it’s more funding, research, time, or effort… it just needs more of it.
According to the Washington Post, the NIH is getting cut by 19% compared to it’s current budget, under the proposed budget. In this proposal, the NIH is to be reorganized. Surprise, surprise! Another government agency being reorganized. Oh, and also the Fogarty International Center would be gone. Which makes sense, because we’re the only country with great researchers and scientists (insert sarcasm font here).
The NIH finally got an increase in funding last year, but now it looks like it might not look so promising for 2018. Read more here.
