The Defense Appropriations Committee of the U.S. House of Representatives passed a bill allocating $5 million in new funding for a peer-reviewed Lupus Medical Research Program on May 17. The program, included in a 2017 Defense Appropriations spending bill, is to be operated by the U.S. Defense Department.
A vote by the full House is expected in June.
The program is a top priority for the Congressional Lupus Caucus and its leadership. Established in 2012 by Reps. Tom Rooney (R-Florida), William Keating (D-Massachusetts), Ileana Ros-Lehtinen (R-Florida), and Jim Moran (D-Virginia), the Caucus serves as a forum for members of Congress and their staffs to help raise lupus awareness and visibility among the public and health professionals.
Passage of the bill is also vigorously supported through an outreach and advocacy campaign by the Alliance for Lupus Research (ALR), the S.L.E. Lupus Foundation, the Lupus Research Institute (LRI), and the LRI National Coalition of state and local organizations, a patients’ advocacy voice for lupus research.
The four Lupus Caucus founders and co-chairs led the effort in the House to advance the new research program. A list of Congressional Lupus Caucus members can be found at: https://rooney.house.gov/legislation/congressional-lupus-caucus
ALR chairman, and NY Jets owner, Woody Johnson expressed deep appreciation for the work of the Caucus and subcommittee on behalf of America’s lupus community, saying in a release: “We thank Defense Appropriations Subcommittee Chairman Representative Rodney Frelinghuysen (R-NJ) and Vice-Chair Kay Granger (R-TX) for championing the establishment of this critically important Lupus Medical Research Program. We commend the entire Committee for recognizing the need for additional peer-reviewed lupus research that will help lead to better understanding of the mechanisms of this devastating chronic disease and new treatment options.”
“Lupus affects millions, including many active duty military, dependents and retired veterans,” said Richard DeScherer, S.L.E. Lupus Foundation president. “We applaud the continued leadership of the Congressional Lupus Caucus in supporting the advancement of lupus research and increased awareness of the often misdiagnosed disease among the general public and health professionals. We are also very proud that the hard work and persistence of advocates across the country succeeded in winning Congressional support.”
The Appropriations Committee bill must still be approved in a vote on the House floor, projected as likely next month. Later this year, House and Senate versions of the bill will be merged into a final conference bill for congressional approval.
Urgent Need Among Military Women Identified
LRI notes that nine out of ten people with lupus are women, and significantly greater risk exists among African-Americans, Hispanics, Native-Americans, and Asians for developing the disease. The group cites Defense Department data showing that women now make up a considerable share of U.S. armed forces, accounting for almost 15 percent of active duty service members, almost 20 percent of reserves, and 15.5 percent of National Guard members. A recent Pew Research Center report also found that the U.S. active-duty female force is racially diverse, with nearly one-third (31%) black (including black Hispanics), and 12 percent reporting Hispanic ethnicity — either white or black. America also has more than two million women veterans, accounting for about 9 percent of the total veteran population — a metric expected to rise to 15 percent by 2035.
Lupus is an acute and chronic inflammatory autoimmune disease, currently incurable, in which a triggering agent causes the body’s immune system to attack its own tissue. The disorder can affect virtually any organ system of the body, including the skin, joints, kidney, brain, heart, lungs, blood and blood vessels. Lupus typically strikes people in their prime, with 80 percent of new cases being diagnosed in women in their childbearing years (ages 15 to 44), interfering with the ability to work, have or raise a family, and, in some cases, care for themselves. It can also cause seizures, strokes, heart attacks, miscarriages, and organ failure. According to the Centers for Disease Control (CDC), by the most conservative estimates, at least 322,000 Americans have definite or probable lupus, with recent independent surveys suggesting prevalence as high as 1.5 million people. There are few therapeutic options for this complex and unpredictable autoimmune disease, which annually costs an estimated $31.4 billion in direct and indirect expenditures.
The Alliance for Lupus Research is a voluntary health organization dedicated to finding better treatments, and ultimately preventing and curing systemic lupus erythematosus (SLE, or lupus). Based in New York City and chaired by Robert Wood Johnson IV, the ALR says that since its founding in 1999, it has given more money to lupus research than any non-governmental agency in the world, committing to date more than $105 million to research into the cause, prevention, and cure of lupus. The ALR’s board of directors funds all of the agency’s administrative and fundraising costs, allowing 100 percent of donations — and proceeds from the organization’s signature fundraising program, “Walk with Us to Cure Lupus” — to be funneled directly to research programs. More information can be found at lupusresearch.org.
Formed 45 years ago, the S.L.E. Lupus Foundation is also dedicated to advancing lupus research, patient education, advocacy, and awareness. In 2000, it helped to launch the Lupus Research Institute to support the bold and novel research needed to drive scientific discovery. Together, the organizations say they have generated more than $200 million for this type of lupus research, funding that has helped to make possible many of the pivotal discoveries of the past decade. More information can be found at LupusNY.org and LupusResearchInstitute.org.
Lupus Research Institute
S.L.E. Lupus Foundation
The Alliance for Lupus Research
Congressional Lupus Caucus
Centers for Disease Control (CDC)