Tag Archives: rare disease

Medical Research: It’s about you and me

collage fact sheetResearch!America’s newest fact sheet series highlights the personal stories of medical research and the importance of increasing the NIH budget in FY15. We hope you will share these fact sheets with your representatives or congressional candidates, or take it with you on Hill or in-district visits. No one who reads these stories can doubt the significance of medical progress. A stronger investment in research is needed now more than ever!

Here are their stories:

What new discoveries are we delaying and missing when we slow the pace of medical and health research?

We’ve made progress. But the funding to sustain it is eroding.

A do-nothing Congress isn’t healthy

Op-ed by The Honorable John Edward Porter, Research!America Chair and former U.S. Representative (1980 – 2001) published in CNN.

John Edward PorterAt every congressional recess, the question remains: What has Congress accomplished to advance medical innovation, or for that matter any of our national priorities?

A ritual of leaving town with no meaningful action on pressing issues seems to have taken hold as lawmakers once again meet with voters in their districts. Indeed, much will happen during this break, but as elected officials hold yet another town hall meeting, Facebook or Twitter chat or public event, thousands will be diagnosed with cancer or get the dreaded confirmation from a physician that they or a loved one has Alzheimer’s disease. Thousands will suffer a heart attack or stroke, and thousands of parents will learn that their child has a rare disease.

Researchers are racing against the clock to identify a new gene or molecule that could lead to the next medical breakthrough and bring us closer to cures and new therapies to halt disease.

Time is of the essence in the scientific community, but unfortunately, our elected leaders continue to squander precious time in political, ideological battles that yield little or no results. Is this the Congress you elected? This is not the first elected body to tackle formidable challenges, but it may be the first that has failed miserably in addressing critical issues that will have short- and long-term implications for the health and well-being of Americans.

Spending bills to fund the National Institutes of Health, the Centers for Disease Control and other agencies in the next fiscal year remain in limbo as sequestration, across-the-board spending cuts enacted in March, tightens its grip on medical innovation. As a result of these mindless budget cuts, researchers are delaying or scrubbing promising studies. Institutions across the country have closed labs, reduced their work forces and implemented hiring freezes. Young scientists are rethinking their career paths or moving abroad to countries that have accelerated investments in research. Continue reading →