A Seat at the Federal Research Table

Washington DC (October 18, 2019)  Fibrous Dysplasia included the Department of Defense Peer-Reviewed Medical Research Program

Thanks to our champion who sits on the Appropriations Committee, Senator Patty Murray (D- WA),  Fibrous Dysplasia made it into the Senate DOD Appropriations Committee recommendations to the Secretary of the Department of Defense in conjunction with the US Surgeon General for their consideration to be included as one of the projects funded under the  $350,000,000 awarded in Fiscal Year 2020 for the Peer-Reviewed Medical Research Program (PRMRP). Senator Murray’s guidance and leadership were a critical ingredient for our success. We would be remiss if we did not thank Senators Shelby, Leahy and Durbin for their leadership on the Appropriations Committee as well as  Senators, Senators Merkley, Markey, Kennedy and Cassidy for their support. Each of these Senators were important to our success.

Earlier this year, FDF launched a successful campaign to include FD/MAS in the Peer-Reviewed Medical Research Program, congressionally directed research program that could unlock additional federal funding specifically for FD/MAS research. “It’s very rare for a disease to be included in this bill on the community’s first attempt,” says Adrienne McBride, FDF’s Executive Director, “This success is a real testament to the many advocates who visited their Senators as well as all those who called, emailed, and wrote to share their rare disease story.” By securing a seat at the federal research table, the FD/MAS community has made an important first step towards unlocking federal research funding and

Lauren Ruotolo, FDF board president is optimistic about outcomes.  “We are thrilled that FD is included among these medical research projects. Fewer than 60 medical areas received this distinction. Funding of this magnitude is a life-changing proposition in terms of pain management, and innovative treatments, not only for FD/MAS patients, but also for military veterans and those on active duty. The benefits of studying FD have implications for treatment of DoD-prevalent conditions, like blast-induced heterotopic ossification and chronic bone pain. ”

Marc Wein MD, PhD, of Harvard Medical School shares “Having cared for several patients with fibrous dysplasia and McCune Albright Syndrome, I am well aware of the challenges these patients face, and the fact that major unmet need exists for this disease.” Wein continues, “This (funding) will encourage basic scientists to study FD and identify new treatments for the FD/MAS community. Since we know the genetic cause of this disorder, I am extremely confident that new treatments for our patients will emerge in the near future.”  

Many obstacles remain between this initial success and the ultimate goal of federal research funds focused on FD. “The Senate has yet to vote on this bill and  there’s a distinct possibility that a continuing resolution vote will lock funding under the previous year’s appropriations bill, and in that case the FD community would have to wait until 2020 to move forward.  If Congress is able to complete its work on a DOD funding bill for next year, the next step will be for FD to draw on its technical expertise to convince the key decision makers to allocate some of the $350 million to FD for peer reviewed research, ” explained Becky Halkias, Managing Director of FTI consulting who, alongside longtime FD advocate Tim Barnicle, has served as a champion volunteer advocating for the FD/MAS community. “Nevertheless, the FD community should be proud of the progress they’ve made in this marathon of a campaign. In my many years of consulting on bi-partisan legislative action, I have never seen a community so determined and passionate about their cause.” With continued focus and advocacy, the FD/MAS community will see this seat at the federal research table turn in to real research.