WASHINGTON, DC – March 19, 2013 – America’s leading proponents for lupus research came together today to host a Congressional briefing to update the U.S. Senate and House of Representatives on the pressing needs of the 1.5 million Americans living with lupus — the prototypical autoimmune disease.
As sequestration imminently threatens funding for scientific research to advance new drug development and a cure, the plight of those suffering with lupus, particularly in underserved communities, is stark. To bring patients’ voices to the fore, the Lupus Research Institute (LRI) in collaboration with the Alliance for Lupus Research and the American Autoimmune Related Diseases Association hosted the briefing along with long-time lupus champion Senator Frank Lautenberg (D-NJ) and the Congressional Lupus Caucus.
“The lupus community has united today to bring federal attention to our common cause, and we are deeply grateful to Senator Lautenberg and members of the Congressional Lupus Caucus for their help in raising awareness of lupus among their colleagues on the Hill,” commented Margaret Dowd, president and CEO of the Lupus Research Institute. “Together we call upon all members of Congress to strengthen support for biomedical research at the National Institutes of Health (NIH). Privately funded research is the engine for discovery. But we need sustained and dependable long-term growth in NIH-funded medical research to turn innovation into new treatments and cures.”
Sharing his experience seeing lupus patients every day, Dr. Robert Katz at Rush University Medical Center and Northwestern Memorial Hospital in Chicago outlined the devastation this autoimmune disease causes for patients and families. “When you see a lupus patient who doesn’t look sick, it’s hard to imagine she suffers from a disease causing such fatigue and pain that she literally cannot make it to work or pick up her child from school. But behind that healthy face is an immune system run amok, attacking her own body at random. Striking any organ and tissue, lupus is a leading cause of heart attack, stroke and kidney disease among young women.”
Protecting the Scientific Progress of the Past Decade
Dr. Mary Crow, Physician-in-Chief and Chair of the Division of Rheumatology at Hospital for Special Surgery delivered a powerful presentation on the importance of federal funding to sustain biomedical research at the NIH in lupus and other autoimmune diseases. “We must protect the invaluable progress of lupus research over the last decade and cannot lose ground at this pivotal juncture when solutions to this confounding disease are finally within reach,” noted Dr. Crow.
Lupus, a Serious Minority and Women’s Health Issue
Speaking about health and racial disparities in lupus, Dr. Betty Diamond of The Feinstein Institute for Medical Research and Albert Einstein College of Medicine in NY provided data disputing widely-held assumption about minorities and clinical research. “Research shows that people of color are just as receptive to participating in clinical trial studies as Caucasians,” said Dr. Diamond. “The obstacle is not so much overcoming patient resistance as has been commonly assumed, but rather for healthcare professionals to abandon their preconceptions and invite lupus patients of all races and ethnicities to participate in clinical trials.”
Time to Speak Out
In addition to hosting the briefing, the LRI and patient advocacy groups from throughout the country visited Congressional representatives, conveying three key requests for federal support:
- Strengthen biomedical research at the NIH
- Join the Congressional Lupus Caucus
- Support a professional education program to improve diagnosis and reduce health disparities in lupus care
“Now is the moment to be heard, when critical decisions will affect the future of biomedical research, an urgent need that cannot wait,” Ms. Dowd emphasized. “Join our grassroots campaign to stop budget cuts from crippling NIH funding for the studies needed to deliver improved treatments for people with lupus and other autoimmune diseases. Please visit LupusResearchInstitute.org or Facebook.com/LupusResearch to send a strong message to Congressional legislators.”