‘‘(1) Basic research to discover the pathogenesis 
and pathophysiology of the disease. 
‘‘(2) Research to determine the reasons under-
lying the disproportionate prevalence of lupus in Af-
rican-American, Hispanic, Native American, and 
Asian women. 
‘‘(3) Epidemiological studies to address the fre-
quency and natural history of the disease and the 
differences between the sexes and among racial and 
ethnic groups with respect to the disease. 
‘‘(4) Clinical research for the development and 
evaluation of new treatments, including new biologi-
cal agents. 
‘‘(5) Research to validate lupus biomarkers. 
‘‘(6) Research to develop improved diagnostic 
tests.’’. 
SEC. 102. STRENGTHENING LUPUS EPIDEMIOLOGY; LUPUS 
STUDY. 
Part B of title III of the Public Health Service Act 
(42 U.S.C. 243 et seq.) is amended by inserting after sec-
tion 318B the following: 
‘‘STRENGTHENING LUPUS EPIDEMIOLOGY 
‘‘SEC. 318C. (a) IN GENERAL.—The Secretary, act-
ing through the Director of the Centers for Disease Con-
trol and Prevention, shall work with a consortium of lead-
ing United States academic health institutions that have
expertise in the epidemiology of lupus to undertake a na-
tional scale lupus epidemiological study to determine the 
true prevalence and incidence of lupus in the United 
States. 
‘‘(b) USE OF FUNDS.—The Director of the Centers 
for Disease Control and Prevention shall enter into a coop-
erative agreement with the consortium described in sub-
section (a) to develop, implement, and manage a system 
for lupus data collection and analysis, including—
‘‘(1) the creation and use of a common data 
entry and management system across all study sites; 
and 
‘‘(2) the enhancement of the 2 study sites in-
volved in the existing lupus patient registry of the 
Centers for Disease Control and Prevention on the 
day before the date of enactment of the Lupus Re-
search, Education, Awareness, Communication, and 
Healthcare Amendments of 2005. 
‘‘(c) GEOGRAPHIC REPRESENTATION.—The Director 
of the Centers for Disease Control and Prevention shall 
ensure that the consortium described in subsection (a) 
represents different geographic regions of the United 
States that have a sufficient number of individuals of all 
racial and ethnic backgrounds disproportionately affected
by lupus, including Hispanics, Asians, Native Americans, 
and African-Americans. 
‘‘(d) CERTAIN ACTIVITIES.—In carrying out sub-
sections (a) and (b), the consortium described in sub-
section (a) shall capture data related to all affected popu-
lations on all forms of lupus, including lupus related dis-
orders. 
‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$3,500,000 for each of the fiscal years 2006, 2007, 2008, 
and 2009. 
‘‘LUPUS STUDY AND REPORT BY THE INSTITUTE OF 
MEDICINE 
‘‘SEC. 318D. (a) CONTRACT.—The Secretary shall 
enter into a contract with the Institute of Medicine to con-
duct a study—
‘‘(1) to evaluate the Federal and State activities 
related to lupus research, education, and awareness 
programs and activities and make recommendations 
for ways in which these initiatives could be ex-
panded; 
‘‘(2) to identify the gaps in Federal research re-
lated to—
‘‘(A) the causes of lupus; 
‘‘(B) lupus detection and diagnosis; 
‘‘(C) lupus treatment; and
‘‘(D) lupus quality-of-life concerns; 
‘‘(3) to make recommendations for building and 
supporting the lupus research enterprise, including 
recommendations for strategies for future basic, clin-
ical, social, and behavioral research—
‘‘(A) to determine the pathophysiology and 
pathogenesis of the disease; and 
‘‘(B) to secure the development of new and 
improved lupus therapies and ways to diagnose 
the disease; 
‘‘(4) to determine the gaps in lupus health pro-
fessional education programs and public awareness 
efforts and make recommendations for ways in 
which the Federal Government can—
‘‘(A) improve public and health profes-
sional awareness of lupus; and 
‘‘(B) partner and support nonprofit vol-
untary health agencies (such as the Lupus 
Foundation of America, Inc.) and academic in-
stitutions and other interested stakeholders 
whose primary purposes are to increase public 
awareness of lupus and to improve the diag-
nosis and treatment of lupus; 
‘‘(5) to make recommendations regarding ways 
to improve the quality of life for people with lupus;
‘‘(6) to summarize the clinical and biological 
features of lupus and the characteristics and man-
agement of major symptoms and make recommenda-
tions for disease management and measurement; and 
‘‘(7) to make recommendations for epidemiolog-
ical studies in the various population groups affected 
by lupus in the United States. 
‘‘(b) REPORT.—Not later than 18 months after the 
date of enactment of the Lupus Research, Education, 
Awareness, Communication, and Healthcare Amendments 
of 2005, the Institute of Medicine shall submit to the Sec-
retary a report containing the information described in 
paragraphs (1) through (7) of subsection (a).’’. 
TITLE II—ENHANCING LUPUS 
AWARENESS AND EDUCATION 
SEC. 201. INCREASING PUBLIC AWARENESS AND IMPROV-
ING HEALTH PROFESSIONAL EDUCATION. 
Part B of title III of the Public Health Service Act 
(as amended by section 102) (42 U.S.C. 243 et seq.) is 
further amended by inserting after section 318D the fol-
lowing: 
‘‘INCREASING PUBLIC AWARENESS OF LUPUS AND 
IMPROVING HEALTH PROFESSIONAL EDUCATION 
‘‘SEC. 318E. (a) IN GENERAL.—The Secretary, act-
ing through the Director of the Office on Women’s Health 
and in collaboration with the Lupus Foundation of Amer-
ica, Inc. and the National Center on Minority Health and 
Health Disparities of the National Institutes of Health, 
shall conduct and support a sustained national lupus pub-
lic awareness and health professional education campaign, 
with an emphasis on reaching populations at highest risk 
for the disease. 
‘‘(b) USE OF FUNDS.—In conducting the sustained 
national lupus public awareness and health professional 
educational campaign, the Director of the Office on Wom-
en’s Health shall—
‘‘(1) promote increased awareness of early 
intervention and treatment so as to significantly im-
prove the diagnosis, treatment, and quality of life for 
people with lupus; 
‘‘(2) direct communication and education ef-
forts toward minority communities that may be un-
derserved or disproportionately affected by lupus; 
and 
‘‘(3) target at-risk women and health profes-
sionals likely to see women with lupus, including pri-
mary care physicians and specialists such as 
rheumatologists, nephrologists, dermatologists, and 
immunologists, so as to help reduce the amount of 
time taken to achieve a correct diagnosis of lupus.