March 2008
National Coalition in DC to Speak for People with Lupus on Capitol Hill
Your Voice for Lupus Research—Coast to Coast
The LRI National Coalition spread across Capitol Hill in early March to speak with 125+ members of the House and Senate.
Their message, delivered for you:
- Be aware of lupus and the damage it can inflict on young women in particular
- Vote for increased funding for research on the causes and potential treatments for lupus
- Encourage implementation of the 5-year Trans-Institute plan for lupus research at the National Institutes of Health
- Recognize and help us do something about the notably high number of black, Hispanic, Native American, and Asian Americans who develop lupus.
One of LRI’s primary goals is to sound the siren of need for lupus research among members of Congress, health groups, the pharmaceutical industry, and the public.
For the people who suffer from lupus-related kidney disease, lupus rash, extreme fatigue, and other complications, research holds the key to better health—and the hope for a long life. Ninety percent of lupus patients are women between the ages of 15 and 44, and death rates reportedly are rising.
It’s going to take bold and innovative work to find answers for this centuries-old yet mysterious disease. Lupus research faces serious limitations that threaten to slow the pursuit of promising new leads, delay the application of hard won scientific insights to improving patient care, and impede efforts to test promising new drugs.
LRI advocates for lupus research in numerous ways:
- Spearheads National Coalition. In 2004 the Institute increased its breadth and scope by gathering together state and local patient organizations into a National Coalition. This “patient voice for lupus research” has already become a mighty engine for advocacy work. Recent National Coalition-sponsored meetings on Capitol Hill led to a congressional directive to the NIH to develop a 5-year trans-institute research plan for lupus. The National Coalition’s dynamic work continues. More »
- Raises Funds. With current government funding of lupus nearly flat, private sector support for lupus research only rises in importance. Estimated budgets for the NIH report a disappointing 0.9% increase in federal funding for lupus research in 2005 and a 0% increase in 2006. LRI has stepped up to the plate, raising more than $13 million from individuals, foundations, and corporations through its Campaign for a Cure and providing thoughtful donors with guidance on strategies for giving, such as including the LRI in their wills--a gesture that ensures their support for the benefit of generations to come. More »
- Promotes Biomarker Initiatives. The LRI introduced its biomarker research initiative in 2002, prompting the federal government to focus on the biomarker search and contributing to the formation of the Lupus Biomarker Working Group and its committees. The group is a consortium of academic research sites, NIAMS intramural investigators, voluntary agencies, and pharmaceutical developers. Its goal: to validate five promising biomarkers to improve diagnosis, monitoring, and treatment of lupus.
- Advocates at the Federal Level. LRI representatives and Coalition members regularly speak out in the name of lupus research and prevalence on Capitol Hill and in other decision-making forums. For example, LRI President Margaret Dowd and others have presented testimony at the FDA on the state of pharmaceutical drug development in lupus. In October 2006, the LRI National Coalition presented a congressional briefing on Racial Disparities in Lupus on Capitol Hill, in cooperation with the office of Rep. Hilda L. Solis (D-CA).
More »
- Empowers Patients, Families, and Friends. The time and involvement of caring citizens makes an enormous difference in sounding the call for more lupus research. Some distribute information. Others organize lupus awareness and fundraising events. Many donate. Find out how you can Get Involved. More »
- Broadens Public Awareness. For Americans to understand the pressing need for the kind of work that LRI supports, the public needs to be educated about lupus. More »
The LRI can't accomplish its goals without you. Make a difference.
