A Weekly Advocacy Message from Mary Woolley: A likely topic of discussion over the next few days; how research relates

Dear Research Advocate,

Today, the Supreme Court surprised many in upholding most aspects of the Affordable Care Act. As the pundits and the blogosphere stoke continuing debate, candidates will stake out positions and policy makers will consider next steps. And everyone will have a point of view. As you express yours, I urge you to use a communication “bridge” to talk about the future of health and health care not only as an outcome of a court or legislative action, but as an outcome of research. Because of research, we live longer lives, death rates from heart disease have declined by 65% over the past 30 years, we don’t consider childhood cancer or HIV/AIDS a death sentence, and we confidently aspire to such challenges as defeating Alzheimer’s and autism, preventing strokes, and putting diabetes in the history books. We must stress that the end goals of health reform and health research are the same – to enable longer, healthier, more productive lives in a nation that efficiently and affordably discovers and delivers safe and effective health care and prevention of disease and disability.

Earlier this week the House and Senate cleared the FDA Safety and Innovation Act, formerly known as “PDUFA,” which the president is expected to sign shortly. As FDA Commissioner Peggy Hamburg noted at a Brookings Institution forum, the FDA is committed to regulatory flexibility. For instance, in response to advances in personalized medicine, FDA is open to approving a drug that works for a clearly identifiable subset of patients with a given disease, even if that drug is not effective for all patients.  Hamburg called the passage of the law “a landmark moment.” Read our press statement on this critical piece of legislation, passed in a bipartisan manner – an accomplishment in itself and an indication that more bipartisan agreement can take place.

Another way to think about the safe and effective use of drugs and devices involves the concept of “repurposing,” such as when a molecule/compound or drug itself has been put aside as ineffective for its stated target. Through innovative public-private partnerships including those initiated by NIH’s new National Center for Advancing Translational Sciences (NCATS), there is a push to look at more of those previously shelved products to examine new uses. History tells us that this has happened before, and science tells us it can happen again. Everyone, worldwide, can benefit from such American ingenuity. We have launched a series of print and Washington, D.C., Metro station ads that highlight examples of repurposing and other unanticipated benefits of investing in research to improve health. Check out our “Nice Save” ads.

In view of the holiday week ahead, I am keeping this letter short. Count on us in early July to hone in on what you can do as an advocate to make the case for research to the voting public (we have great examples to call out), to stop sequestration, and to make it clear that patients and all of us who are stakeholders in research for health are not satisfied with the status quo. We all aspire to better health and well-being, and we are all committed to research as an essential pathway toward achieving that goal.

Have a safe and happy Fourth of July.

Mary Woolley

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