I 
109TH CONGRESS 
1ST SESSION H. R. 3307
To amend the Public Health Service Act to enhance public and health profes-
sional awareness and understanding of lupus and to strengthen the 
Nation’s research efforts to identify the causes and cure of lupus. 
IN THE HOUSE OF REPRESENTATIVES 
JULY 14, 2005
Ms. ROS-LEHTINEN (for herself, Mr. BISHOP of Georgia, Mr. BUTTERFIELD, 
Mrs. CHRISTENSEN, Mr. CLAY, Mr. CLEAVER, Mr. CONYERS, Mr. DAVIS 
of Illinois, Mr. AL GREEN of Texas, Mr. HASTINGS of Florida, Ms. JACK-
SON-LEE of Texas, Mr. JEFFERSON, Mrs. JONES of Ohio, Ms. KIL-
PATRICK of Michigan, Ms. LEE, Mr. MEEKS of New York, Ms. MOORE 
of Wisconsin, Ms. NORTON, Mr. OWENS, Mr. RANGEL, Mr. RUSH, Mr. 
SCOTT of Virginia, Mr. THOMPSON of Mississippi, Ms. WATERS, Ms. 
WATSON, Mr. WYNN, Mr. WEXLER, Mr. ENGEL, Ms. WASSERMAN 
SCHULTZ, Mr. LYNCH, Mr. MEEK
of Florida, Mr. KILDEE, Ms. 
SCHAKOWSKY, Mr. HINCHEY, Mr. BRADY of Pennsylvania, Mr. TOWNS, 
Ms. CARSON, and Mr. FORD) introduced the following bill; which was re-
ferred to the Committee on Energy and Commerce 
A BILL 
To amend the Public Health Service Act to enhance public 
and health professional awareness and understanding of 
lupus and to strengthen the Nation’s research efforts 
to identify the causes and cure of lupus.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Lupus Research, Edu-
cation, Awareness, Communication, and Healthcare 
Amendments of 2005’’. 
SEC. 2. TABLE OF CONTENTS. 
The table of contents for this Act is as follows:
Sec. 1. Short title. 
Sec. 2. Table of contents. 
Sec. 3. Findings. 
TITLE I—EXPANDING AND IMPROVING RESEARCH ON LUPUS 
Sec. 101. Expansion of lupus biomedical research. 
Sec. 102. Strengthening lupus epidemiology; lupus study. 
TITLE II—ENHANCING LUPUS AWARENESS AND EDUCATION 
Sec. 201. Increasing public awareness and improving health professional edu-
cation.
SEC. 3. FINDINGS. 
Congress makes the following findings: 
(1) Lupus is a serious, complex, debilitating 
autoimmune disease that can cause inflammation 
and tissue damage to virtually any organ system in 
the body, including the skin, joints, other connective 
tissue, blood and blood vessels, heart, lungs, kidney, 
and brain. 
(2) The Lupus Foundation of America, Inc. es-
timates that approximately 1,500,000 to 2,000,000 
Americans live with some form of lupus; lupus af-
fects women 9 times more often than men and 80 
percent of newly diagnosed cases of lupus develop 
among women of child-bearing age.
(3) Lupus disproportionately affects women of 
color; it is 2 to 3 times more common among Afri-
can-Americans, Hispanics, Asians, and Native Amer-
icans and is generally more prevalent in minority 
populations, a health disparity that remains unex-
plained. According to the Centers for Disease Con-
trol and Prevention, the rate of lupus mortality has 
increased since the late 1970s and is higher among 
older African-American women. 
(4) There have been no new drugs approved by 
the Food and Drug Administration specifically for 
lupus in nearly 40 years and while current treat-
ments for the disease can be effective, they can lead 
to damaging side effects. 
(5) The pain and fatigue associated with lupus 
can threaten people’s ability to live independently 
and make it difficult to maintain employment and 
lead normal lives. One in 5 people with lupus is dis-
abled by the disease, and consequently receives sup-
port from government programs, including medicare, 
medicaid, social security disability, and social secu-
rity supplemental income. 
(6) The estimated average annual cost of med-
ical treatment for an individual with lupus can range 
between $10,000 and $30,000; for people who have
the most serious form of lupus, medical costs can 
greatly exceed this amount, causing a significant 
economic, emotional, and social burden to the entire 
family and to society. 
(7) More than 1⁄2 of the people with lupus suf-
fer 4 or more years and visit 3 or more physicians 
before obtaining a diagnosis of lupus; early diagnosis 
of, and commencement of treatment for, lupus can 
prevent or reduce serious organ damage, disability, 
and death. 
(8) Despite the magnitude of lupus and its im-
pact on individuals and families, health professional 
and public understanding of lupus remains low; only 
1 of 5 Americans can provide even basic information 
about lupus, and awareness of lupus is lowest among 
adults ages 18 to 34, the age group most likely to 
develop symptoms of lupus. 
(9) Lupus is a significant national health issue 
that deserves a comprehensive and coordinated re-
sponse by Federal and State governments with the 
involvement of the healthcare provider, patient, and 
public health communities.
TITLE I—EXPANDING AND IM-
PROVING 
RESEARCH 
ON 
LUPUS 
SEC. 101. EXPANSION OF LUPUS BIOMEDICAL RESEARCH. 
Section 441A of the Public Health Service Act (42 
U.S.C. 285d–6a) is amended to read as follows: 
‘‘EXPANSION OF LUPUS BIOMEDICAL RESEARCH 
‘‘SEC. 441A. (a) IN GENERAL.—The Secretary, act-
ing through the Director of the Institute, shall expand and 
intensify research and related activities of the Institute 
with respect to lupus. 
‘‘(b) COORDINATION WITH OTHER INSTITUTES.—
The Director of the Institute shall coordinate the activities 
of the Director under subsection (a) with similar activities 
conducted by the other national research institutes and 
agencies of the National Institutes of Health to the extent 
that such institutes and agencies have responsibilities that 
are related to lupus. 
‘‘(c) PROGRAMS FOR LUPUS.—In carrying out sub-
section (a), the Director of the Institute shall conduct or 
support research to expand the understanding of the 
causes of, and to find a cure for, lupus. Activities under 
such subsection shall include conducting and supporting 
the following: