Reduce Health Disparities in Lupus

The LRI National Coalition requests that Congress provide the HHS Office of Minority Health budget with $2 million in the Fiscal Year 2013 Labor/HHS Appropriations Bill to continue a new nationwide lupus education program for healthcare professionals.

New educational initiatives for healthcare providers are desperately needed to eliminate numerous barriers to early medical diagnosis of lupus.

In a special report on lupus to Congress in January 2010, the Department of Health and Humans Services highlighted the effect of disparities on lupus patients stating, “Many still die prematurely from lupus because of complications of the disease, late diagnosis, and co-occurring chronic conditions such as arteriosclerosis, hypertension, and diabetes.”

The report reinforces the need for health education efforts stating:  “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 provide the best opportunity for improving quality of life for patients and for controlling morbidity and mortality.”

Many lupus patients often visit multiple doctors and go years before receiving a correct diagnosis. There is a profound need for improved professional awareness and education on lupus -- a substantive effort to engage our nation’s health professionals in finding ways to improve lupus diagnosis and treatment.

  • This debilitating autoimmune disease affects over one-and-a-half million persons in the United States, 90 percent of whom are women.
  • Lupus disproportionately affects African Americans, Hispanics, Asians and Native Americans and is three times more common in African Americans than Caucasians.
  • Approximately 80 percent of new cases of lupus develop among women in their childbearing years.
  • A recent CDC report found that the death rate from lupus among African American women ages 45-64 had increased almost 70 percent over the previous 20 years.  During that period, over one-third of lupus deaths were among those under the age of 45.

To begin reversing these trends in lupus, the Department of Health and Human Services recently launched a new national effort: “The Lupus Initiative.”  The program is engaging healthcare professionals, educators, patients and clinicians across the nation in developing new activities and materials in a campaign to improve continuing medical education in this area.  New medical school curricula, lecture materials and other science-based content are being developed and made available in a variety of ways, including the initiative website: http://www.thelupusinitiative.org

In building this national lupus health education program for health care providers, the HHS Office of Minority Health is involving a wide array of public health, community, academic, medical and industry organizations, including those working to improve medical school curricula.

The program responds directly to a primary finding from a January 2012
Institute of Medicine Report, Living Well with Chronic Illness -- A Call for Public Health Action:

  • “Enhanced collaboration among the public health, health care, and community non-healthcare sectors could produce better prevention and treatment outcomes for people living with chronic disease.”

Please send a letter of support for this funding request and report language to:

House of Representatives:
Labor-HHS Appropriations Subcommittee Chairman Dennis Rehberg and Ranking Member Rosa DeLauro 

U.S. Senate:
Labor-HHS Appropriations Subcommittee Chairman Tom Harkin and Ranking Member Richard Shelby

Fiscal Year 2013 Request – Lupus Research Institute National Coalition

Appropriations Subcommittee on Labor, HHS, Education and Related Agencies

Department of Health and Human Services
Office of the Secretary/Office of Minority Health

Bill language:
Of the amount provided to the HHS Office of Minority Health,
$2,000,000 is to continue national lupus education efforts with health professionals.

Report language:
Lupus health education program. – The Committee includes $2,000,000 for the Office of Minority Health to continue implementation of a national health education program on lupus for health care providers with the goal of improving diagnosis for those with lupus and reducing health disparities. The program responds directly to a primary finding from a January 2012 Institute of Medicine Report,  Living Well with Chronic Illness -- A Call for Public Health Action that “enhanced collaboration among the public health, health care, and community non-healthcare sectors could produce better prevention and treatment outcomes for people living with chronic disease.” The Department’s January 2010 report to Congress on lupus highlighted the effect of disparities on lupus patients and said, “Many still die prematurely from lupus because of complications of the disease, late diagnosis, and co-occurring chronic conditions such as arteriosclerosis, hypertension, and diabetes.”  The report reinforced the need for health education efforts stating 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 provide the best opportunity for improving quality of life for patients and for controlling morbidity and mortality.” The Committee continues to strongly support this critically important national education effort to engage health care providers, educators and schools of health professions in working together to improve lupus diagnosis and treatment through education.

 

 

For more information, contact Brent Jaquet, CRD Associates, 202 484-1100 or bjaquet@dc-crd.com