Founded in 1981Educate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy, and research funding for better treatments and eventual cures.
|Angela Godby, Assistant Vice Chancellor for Federal Relations for the University of Texas System. She is affected with lamellar/CIE.|
President Obama Signs Continuing Resolution. Now what?
On March 27, 2013, President Obama signed into law a bill that keeps the federal government up and running through the end of the fiscal year in September. The bill included a small increase for medical research at the National Institutes of Health ($71 million). That’s the good news. The bad news is that the bill comes after the March 1 implementation of over $85 billion in cuts in federal spending (the so called “sequester”), including $1.6 billion in cuts at NIH.
Facing the reality of a nine percent cut in funding for the rest of this year, NIH is scaling back on new research grant opportunities and is reviewing existing grants and contracts. While medical research will still continue, these cuts come on top of level or reduced funding over the past few years. Unfortunately, this means a reduction in the amount of important research on rare diseases like ichthyosis.
Is there any hope for the future? Maybe. While the FY13 process was delayed by almost six months, the FY14 process is already in motion. Normally, the budget process is kicked off by the President’s budget submission in February. However, nothing is ever normal in Washington, D.C. This year, the sequester put the President’s budget in limbo. The President has not yet submitted his budget plan (it is expected April 8). The House and Senate have passed two very different plans that essentially lay out each side’s priorities. These documents are simply blueprints of spending plans. In a divided Congress (currently, a Republican House of Representatives and a Democratic Senate), budget plans tend to look more like political party platforms versus real spending plans.
The rubber meets the road during the appropriations process. That process will be ongoing through the fall. Thankfully, many members of Congress are supportive of NIH, but we need to keep up the fight for additional funding – especially in light of limited increases in recent years and the sequester. I strongly encourage you to reach out to your member of Congress to educate them about ichthyosis and the importance of further NIH research into skin diseases. Make sure to personalize your story!
Visit the News on the Hill Archives
|Sequestration - What is it and what does it mean to me? - Fall 2012|
|US Supreme Court Upholds Healthcare Reform Package - Summer 2012|
|Deficit Reduction Dominates DC - Fall 2011|
|Health Reform - What Does it Mean to You? - Fall 2010|
|Healthcare Reform Debate Heats Up in Washington - Summer 2009|
|Slow Start for Obama Health Agenda - Winter 2009|
|NIH to Receive Funding Boost - Winter 2009|
|FY 09 Appropriations - Fall 2008|
|Health Information Technology Legislation Approved - Summer 2008|
|Genetic Non-Discrimination Act Signed into Law - Summer 2008|
|Fight for Increased Funding for NIH - Summer 2008|