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It’s Time to Do Something.

 #itstimetospeak

NIH Budget Cuts, Government Shutdown, and What You Can Do

The recent government shutdown has added yet another layer of challenges to the rare disease research community, as the shutdown includes the federal agency, National Institutes of Health. New research grants aren’t being processed at this time and frustrated researchers are grinning and bearing as their attempts at trying to get funding for their projects, or support for ongoing clinical trials, are on pause.

Hopefully, the shutdown is, at best, a brief blip on the screen – and at worst, a temporary annoyance. Of greater concern is the earlier debt-limit proposal back in August 2011 and the implementation of the “sequester” cuts in early 2013 – a problem that’s not going away any time soon. In fact, under sequestration and the current budget caps, the NIH was cut by $1.7 billion this year and funding for research is scheduled to face another round of cuts in FY14 and beyond.*  

And the cuts have, of course, hacked at our very doorstep.  Dr. Keith Choate, one of our FIRST-funded doctors and member of our Medical & Scientific Advisory Board, and an enthusiastic participant in FIRST conferences in events, mentioned during our regional conference in Mahwah, NJ, that his lab faces significant sequester-related cuts. It’s possible he may lose funding for a grad student in his lab, and with some of his current funding expiring in November, he’s expecting to have to make even further cuts to his lab, which means that he won’t be able to achieve as much as he had hoped.

Dr. Choate’s Gene Discovery Project at Yale has made a huge difference in the lives of many families affected with ichthyosis, and that project has discovered new genes relevant to ichthyosis. Isolating these different genes is important because it means we can tailor treatments and potential cures to specific mutations.  But, now, it’s up to us to be sure every voice is heard and that these doctors are given every possibility to continue their work with as little interruption as possible.

 

So what can you do to help?

 

Take action. Because it is a rare disease, ichthyosis is not well recognized, understood or researched. Increased education of our communities and elected officials will help gain the much needed attention, and hopefully lead to a better quality of life for ichthyosis patients, better treatments, and possibly even a cure.

As members of the NIAMS Coalition, we have been advocating for the following funding levels in the FY14 appropriations bills: $32 billion for the NIH and $541 million specifically for NIAMS, the branch of the NIH that supports skin disease medical research.  FIRST is making every effort to be sure that your voices are heard to those making the decisions that will affect your very future. But we need your help. You are the ones living the unique experience of ichthyosis, and struggling with a skin disorder, for which, currently, there is no cure.  We encourage you to write to your local paper and tell them your story; inform your local district representative or state senator of your situation; expose as much detail about ichthyosis, and how it has affected your life.  (Sample Letter)

 

Not sure who to contact?

House of Representatives’ website: www.house.gov.  Type your zip code into the box in the upper right hand corner to find your representative.

 

State Senate: www.senate.gov. Enter your state to find your senator.

 

The louder we are, the more likely we’ll be heard. Follow #itstimetospeak on Twitter for self advocacy news and information from FIRST.

 

* 2013 AADA Legislative Conference  



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