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

Following year-long advocacy by the Lupus Research Institute and its National
Coalition of patient organizations, legislation approved Wednesday,
February 25th by the U.S. House of Representatives 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.

The bill, which contains 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…”