Sharon Terry

I was excited to learn of the newly proposed National Center for Advancing Translational Research (NCATS) at the National Institutes of Health (NIH) because it offers an unparalleled opportunity to advance translational medicine and improve human health.

Last year, despite more than 100 billion dollars in research spending, only 20 drugs came to market. This is much too slow and needs to be vastly improved. Further, fewer than 200 of the 7,000 rare diseases have any available therapy options. The current system of therapeutic development has been failing patients and consumers for far too long and the time to transform translational medicine is upon us. Our network at Genetic Alliance includes more than 10,000 health related organizations, 1,200 of which are disease-specific advocacy organizations representing the millions of Americans suffering from diseases and conditions. For us there is an urgent need to bring the promise of translation to fruition.

I think that NIH has both the potential and the responsibility to leverage its existing and emerging programs and resources to accelerate translational medicine. The passage of the Cures Acceleration Network highlights that both the American public and Congress share this expectation that NIH will play a leading role in improving human health outcomes through translational research. The establishment of Therapies for Rare and Neglected Disease is another example. There is a gap in our ability to create therapies, and we need to be working to fill it now.

I’ve worked for a number of years with all of the Federal agencies charged with promoting the nation’s health. There are enormous silos preventing the coordination essential to developing timely and robust diagnostics and therapies. The NCATS is essential for this mission. We also work with academia, biotech and pharmaceutical companies and understand the limitations of each of them, and of NIH. A coordinated effort, among academia, biotech and pharmaceutical companies, and advocacy organizations, is critical to overcome the problems inherent in drug development, particularly in these early years of precision (personalized) medicine. NIH is upping the ante – haven’t we all heard, in every meeting: “Someone has to lead, someone has to step up!” This is it. We must all step up to help put the pieces together for a new system of translation.

We all know numerous ways in which the health care system is broken. Right now, so is the pipeline trickling into it. It is time to put aside turf, territoriality and all the man-made obstacles to these already complex scientific challenges. It is time to work together, and here’s hoping this new center has a radically open and innovative culture.

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