Demonstrates the Power of Patient Advocacy
Lupus patients will have a new medical research program at work for them in the future if Bill H.R. 1301 passed today by the House of Representatives becomes law. The House approved the Fiscal 2017 Defense Appropriations Conference Report which designates $5 million for new peer-reviewed lupus research under the Congressionally Directed Medical Research Program operated by the Army Medical Research and Materiel Command in Ft. Detrick, MD. Next the bill must be considered by the U.S. Senate.
The new program is the direct result of over a decade of tireless outreach by Lupus Research Alliance advocates and others, demonstrating the evolution of persistent patient advocacy. In 2004, advocates from the organization first initiated and organized the effort to include lupus as one of many diseases eligible for funding through the Department of Defense Peer-Reviewed Medical Research Program. Their consistent efforts successfully maintained this designation for lupus research each year, resulting in over $13 million dollars awarded to date.
Solid advocacy achievement now paves the way for the new bill that, if approved, will dedicate at least $5 million specifically for lupus research each year. With this appropriation, scientists nationwide will be able to advance work to drive discovery toward better treatments and a cure for lupus.
Adequate funding for lupus research is a top priority of the Congressional Lupus Caucus. Caucus Co-chairs Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL) and Eddie Bernice Johnson (D-TX) led the request for 2017 legislation to create the new lupus research program.
“Our advocates strongly supported the Congressional Lupus Caucus,” noted Margaret G. Dowd, co-president and co-CEO, Lupus Research Alliance. “Sharing their stories with legislators in person during Lupus Advocacy Day 2016, along with hundreds of emails and phone calls, our lupus advocates nationwide brought to life the critical importance of funding innovative research to deliver urgently needed safe therapies to manage this debilitating chronic disease.”
“In addition to the Congressional Lupus Caucus leaders, we sincerely thank House Appropriations Chairman Rodney Frelinghuysen (R-NJ) and Defense Subcommittee Chair Kay Granger (R-TX) for their efforts to champion this effort,” noted Kenneth M. Farber, Lupus Research Alliance co-president and co-CEO. “These visionary leaders – and all the members of the House and Senate defense appropriations subcommittees – appreciated the difficult health challenges people with lupus face, including those serving in our military. They recognized the need to invest in world-class scientific research and we thank them all.”
Military Women at Risk for Lupus
Nine out of ten people with lupus are women and the risk is significantly greater among African-Americans, Hispanics, Native-Americans and Asians. Women account for almost 15 percent of active duty Service Members, almost 20 percent of Reserves and 16 percent of the National Guard. A recent Pew Research Center report found that the active-duty female force is racially diverse – nearly one-third (31%) of active-duty women are black (including black Hispanics). Twelve (12) percent of women in the Armed Forces report their ethnicity as Hispanic, whether white or black. Our nation now has over 2 million women veterans.
Lupus is a chronic autoimmune disease that causes inflammation and tissue damage to any organ system in the body. The health effects of lupus include heart attacks, strokes, seizures, organ failure, and possible death.
About the Lupus Research Alliance
The Lupus Research Alliance is the largest private funder of lupus research, united to free the world from lupus by harnessing the power of innovative science to make a difference for people living with the prototypical autoimmune disease. Through the power of collaboration, we are relentlessly focused on seizing every opportunity to transform the lives of all affected – patients, families, loved ones and the entire lupus community.