New report describes state of lupus research, impact of disease and barriers to care

Jan 23 2010

New report resulting from Lupus Research Institute's congressional advocacy describes state of lupus research, impact of disease, and barriers to care

A major report on lupus from the Secretary of Health and Human Services to the U.S. Congress this week reviews the state of the disease and documents the need for a comprehensive national provider health education program to help eliminate the barriers of racial disparities in the early medical diagnosis and treatment of lupus.  

The report was the result of advocacy by the Lupus Research Institute's National Coalition of state and local lupus organizations. The LRI National Coalition (LRI) vigorously petitioned for congressional funding for a new National Lupus Health Education Program for physicians and healthcare providers, successfully working to secure federal funding of $2.6 million to date to advance needed professional education about lupus.

The new education program is 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 and implemented through the American College of Rheumatology (ACR).

The Secretary's report highlights the effect of disparities on lupus patients, stating that "many still die prematurely from lupus because of complications of the disease, late diagnosis and co-occurring chronic conditions." 

It also documents the need for health education efforts, noting that "until researchers discover a cure or new ways of identifying at-risk individuals as well as diagnosing and treating lupus, educating health care professionals about the importance of early diagnosis and teaching patients how to manage and cope with lupus provides the best opportunity for improving quality of life for patients and for controlling morbidity and mortality."

"We are delighted that a wide spectrum of federal agencies and leading medical, research, and health organizations across the country will now collaborate on this crucial health education program," said LRI President Margaret G. Dowd. "The program rollout began with a kick-off meeting last week in Atlanta hosted by the ACR." 

The LRI National Coalition is committed to ongoing advocacy leadership in advancing additional federal funding for this crucial national lupus education program, she added.

"This National Lupus Health Education Program is a hallmark event in a 10-year effort by LRI National Coalition members to bring attention to the issues of racial disparity and support to the needs of people with lupus, particularly those in underserved communities," said Dowd.