February 2009


LRI Advocacy Results in Legislation to Fund New National Lupus Education Program for Physicians and Healthcare Providers

Appropriations Bill Scheduled for House Vote Wednesday

Following year-long advocacy by the Lupus Research Institute and its National Coalition of patient organizations, legislation scheduled to be considered by the U.S. House of Representatives this Wednesday, February 25th contains a provision providing $1 million to establish a national lupus health education program for physicians and healthcare providers.

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 physicians. 

Once approved by the House of Representatives, the bill—containing funds for most of the domestic federal agencies for the remainder of the fiscal year—will be sent to the U.S. Senate for a final vote where it is expected to be completed and presented to President Obama for signature before March 6th. 

A Key Priority for Diagnosis and Treatment

“The entire lupus community, including the families and friends of everyone with lupus, is deeply indebted to the U.S. Congress for recognizing this need and responding to the challenge,” said Margaret Dowd, President of the Lupus Research Institute. 

“In particular, we wish to thank our key Members of Congress who took strong leadership positions on this throughout the year:  Senator Frank Lautenberg, Representative Lucille Roybal-Allard, Senator Joe Lieberman, Labor-HHS Appropriations Subcommittee Chair Senator Tom Harkin, House Appropriations Committee Chairman David Obey and former Representative Chris Shays. Each in their own way has been a champion for lupus patients in this effort.”

“Last January, the LRI National Coalition made the establishment of the new program its top legislative priority, recognizing that we as a nation must take effective action to reduce health disparities, and eliminate barriers to diagnosis for lupus patients,” said Ms. Dowd.

“We thank all of the patients and their family members around the country who traveled to their Congressional offices—whether in Washington or their local communities—to help educate Congress about the need for clinical education programs.” 

Collaborative Government Action

The effort outlined in the Congressional legislation will be led by the HHS Office of Minority Health (OMH) in consultation with the U.S. Surgeon General and the Office of Women’s Health.

In the statement of managers accompanying the new legislation, the Appropriations Committee writes that the funding is provided by Congress to “…conduct a national health provider education program to improve lupus diagnosis and treatment and reduce health disparities. OMH is encouraged to involve a wide array of public health, community, academic, medical, and industry organizations, including those working to improve medical curricula. OMH shall provide a report by May 1, 2009 on lupus, associated health disparities, and impact of the disease on the population to the Committees on Appropriations of the House of Representatives and the Senate.”

Last summer, the U.S. Senate’s version of the Fiscal Year 2009 appropriations bill had similar language concerning the need for such a campaign. Senate Appropriations Report 110-410 stated:

“The Committee is concerned about barriers to early medical diagnosis of lupus, a debilitating autoimmune disease that is up to three times more common among African Americans, Hispanics and Native Americans and affects over 1.5 million persons, 90 percent of whom are women. 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 women under the age of 45. To combat these trends, the Committee believes there is a need for a substantive effort to engage our Nation's health professionals in finding ways to improve lupus diagnosis and treatment…”