Providing a voice for patients with lupus through advocacy programs is a key component of the Foundation’s mission. Working on both the national and local levels, efforts focus on influencing policy in such areas as drug reimbursement, the establishment of Preferred Drug Lists, racial disparities, and securing federal funding to close the gap in lupus research.

The Foundation advocates on behalf of patients to stimulate and promote legislation aimed at developing better treatments and, ultimately, a cure for lupus. We also actively work to oppose bills that have a detrimental effect on health care and biomedical research in lupus.

Advocacy Results in Congressional Funding Of New National Lupus Health Education Program 

Wednesday, March 11, 2009 – As a result of long term advocacy outreach by the Lupus Research Institute (LRI) National Coalition, of which the S.L.E. Lupus Foundation is a founding member, today President Obama signed legislation appropriating $1 million in new funding for a national lupus health education program for healthcare providers. The education program will be led by the Office of Minority Health in the federal Department of Health and Human Services in partnership with the U.S. Surgeon General and the Office of Women’s Health.

H.R. 1105, the Omnibus Appropriations Act for 2009, provides the funding to the Office of Minority Health in the federal Department of Health and Human Services to begin carrying out comprehensive medical education efforts aimed at primary care clinicians.

Helping to Make it Happen: Office of Minority Health Deputy Assistant Secretary Garth Graham, M.D. (U.S. Health and Human Services) meets with LRI President, Margaret Dowd.

“This is the culmination of a ten year effort to bring attention and support to the needs of people with lupus, particularly those in underserved communities,” said Margaret G. Dowd, president of the LRI. “Lupus is more prevalent among African-Americans and Hispanics, particularly young women. It has been a priority for the LRI National Coalition to eliminate racial disparity in the diagnosis and treatment of lupus.”

“The entire lupus community, including the families and friends of everyone with lupus, is deeply indebted to the U.S. Congress for recognizing the need and responding to the challenge,” continued Dowd. “In addition, we thank all who invested their time and energy into the effort to gain Congressional funding for needed clinical education programs on lupus.”

Member groups of the LRI began their outreach into underserved communities 10 years ago with the creation of the first neighborhood Lupus Cooperative in East Harlem founded by S.L.E. Lupus Foundation of New York in 1999. Cooperatives have since been opened in the Bedford-Stuyvesant neighborhood of Brooklyn and the South Bronx, both areas with large African-American and Hispanic populations.

Over the years, the LRI National Coalition has created visibility for the needs of underserved populations through awareness building, advocacy and education programs on a national, state and local level.

Highlights have included:

• “Invisible No More” forum on race and lupus at the Congressional Black Caucus Annual Legislative Conference in 2004.
• Educational panel on heart disease and lupus presented at the Congressional Black Caucus Annual Legislative Conference in 2005.
• Spanish language public awareness campaign to alert Hispanic women to the dangers of lupus (2005).
• Congressional briefing on racial disparity in lupus (2006).
• Achieved the first ever NIH 5-year lupus research plan through the efforts of Congressman Bill Young that incorporated health disparities research (2007).
• Five City series on the increased risk of heart disease in people with lupus, particularly young women and African-American women. Presented in 2007 in conjunction with the Association of Black Cardiologists. The series was held in New York City, San Francisco, Chicago, Los Angeles and Detroit. 

The S.L.E. Foundation is a proud member of The Lupus Research Institute (LRI) National Coalition, the advocacy network of state and local lupus organizations and other supportive groups united to:

• Promote increased education and awareness of the seriousness of lupus and the need for increased research.
• Advocate for the eradication of lupus through vigorous public and private-supported research efforts.
• Collaborate on initiatives aimed at increasing funding for novel research in lupus.
• Empower lupus patients to actively advocate for improved treatments and a cure.