On the minds of everyone involved in the care of sick children is the pressing need for more pediatric research funding. Last November, Congress finally passed the National Pediatric Research Act. It authorizes the National Institutes of Health to support a nationwide network of up to 20 pediatric research consortia, but it falls short of actually increasing NIH spending. Indeed, the next step in implementing the Act is to secure a specific funding commitment from the NIH or Congress.
The prospects for such alliances are good. Patient advocacy foundations are increasingly active in research, and academic-industry partnerships are on the rise. At Boston Children’s Hospital alone, sponsored research and collaborations with foundations and industry have tripled from nine in 2009 to 29 in 2013. Alan Crane, MBA, a partner at Polaris Partners and an advisor to Boston Children’s Technology and Innovation Development Office, points out that drug discovery is much harder and more complex today than it used to be—just as many products are coming off patent.
“If you build it, he will come,” the ghosts of baseball players past tell a farmer in Field of Dreams. But it’s not that easy. To put people in the seats you have to have all of the right pieces: the right team, including players and managers; the right park, one that works for both the team and the fans; and a passion for being the best at the game.
In the field of rare diseases, not only are institutions like Children’s Hospital Boston stepping up to the plate, but industry and government are joining the game, bringing expertise, guidance and infrastructure. Together, they’re starting to turn basic biomedical discoveries – many made possible only through dedicated patients and their families – into lifesaving treatments.