Lupus Research, Education, Awareness, Communication, and Healthcare Amendments of 2007 - Amends the Public Health Service Act to require the Director of the National Institute of Arthritis and Musculoskeletal and Skin Diseases to expand research on lupus to include: (1) basic research to discover the pathogenesis and pathophysiology of the disease; and (2) research to validate lupus biomarkers.
Requires the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to work with a consortium of academic health institutions to undertake an epidemiological study to determine the prevalence and incidence of lupus in the United States. Requires the Director of CDC to: (1) enter into a cooperative agreement with such consortium to develop, implement, and manage a system for lupus data collection and analysis; and (2) ensure that such consortium represents different geographic areas and includes individuals of racial and ethnic backgrounds disproportionately affected by lupus.
Requires the Secretary to enter into a contract with the Institute of Medicine to study and make recommendations related to lupus, to include: (1) evaluating federal and state activities related to lupus and recommending ways to expand such activities; (2) identifying gaps in federal research; and (3) recommending ways to improve the quality of life for people with lupus.
Requires the Secretary, acting through the Director of the Office on Women's Health, to conduct and support a national lupus public awareness and health professional education campaign, with an emphasis on reaching populations at highest risk for the disease.
[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1192 Introduced in House (IH)]
110th CONGRESS
1st Session
H. R. 1192
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.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
February 27, 2007
Mr. Meek of Florida (for himself, Ms. Ros-Lehtinen, Mr. Lewis of
Georgia, Mr. Brady of Pennsylvania, Ms. Jackson-Lee of Texas, and Mr.
Ortiz) introduced the following bill; which was referred 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 Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Lupus Research, Education,
Awareness, Communication, and Healthcare Amendments of 2007''.
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
education.
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. estimates that
approximately 1,500,000 to 2,000,000 Americans live with some
form of lupus; lupus affects 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 African-Americans, Hispanics,
Asians, and Native Americans and is generally more prevalent in
minority populations, a health disparity that remains
unexplained. According to the Centers for Disease Control 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 treatments 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 disabled by the disease, and consequently receives
support from government programs, including medicare, medicaid,
social security disability, and social security supplemental
income.
(6) The estimated average annual cost of medical 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 suffer 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 impact 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 response by Federal
and State governments with the involvement of the healthcare
provider, patient, and public health communities.
TITLE I--EXPANDING AND IMPROVING 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, acting 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 subsection (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:
``(1) Basic research to discover the pathogenesis and
pathophysiology of the disease.
``(2) Research to determine the reasons underlying the
disproportionate prevalence of lupus in African-American,
Hispanic, Native American, and Asian women.
``(3) Epidemiological studies to address the frequency 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 biological 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 section 318B the following:
``strengthening lupus epidemiology
``Sec. 318C. (a) In General.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention, shall work
with a consortium of leading United States academic health institutions
that have expertise in the epidemiology of lupus to undertake a
national 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 cooperative agreement with
the consortium described in subsection (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 involved 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 Research, Education, Awareness, Communication, and
Healthcare Amendments of 2007.
``(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 subsections (a) and (b),
the consortium described in subsection (a) shall capture data related
to all affected populations on all forms of lupus, including lupus
related disorders.
``(e) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section $3,500,000 for each of the
fiscal years 2008, 2009, 2010, and 2011.
``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 conduct 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 expanded;
``(2) to identify the gaps in Federal research related 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, clinical, 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 professional
education programs and public awareness efforts and make
recommendations for ways in which the Federal Government can--
``(A) improve public and health professional
awareness of lupus; and
``(B) partner and support nonprofit voluntary
health agencies (such as the Lupus Foundation of
America, Inc.) and academic institutions and other
interested stakeholders whose primary purposes are to
increase public awareness of lupus and to improve the
diagnosis 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 management of major symptoms
and make recommendations for disease management and
measurement; and
``(7) to make recommendations for epidemiological 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 2007, the Institute of Medicine shall submit
to the Secretary 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 IMPROVING 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 following:
``increasing public awareness of lupus and improving health
professional education
``Sec. 318E. (a) In General.--The Secretary, acting through the
Director of the Office on Women's Health and in collaboration with the
Lupus Foundation of America, 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 public 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 Women's Health shall--
``(1) promote increased awareness of early intervention and
treatment so as to significantly improve the diagnosis,
treatment, and quality of life for people with lupus;
``(2) direct communication and education efforts toward
minority communities that may be underserved or
disproportionately affected by lupus; and
``(3) target at-risk women and health professionals likely
to see women with lupus, including primary 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.
``(c) Certain Activities.--To the extent practicable and
appropriate, the Secretary shall ensure that communications under
subsections (a) and (b) provide the latest medically sound information
related to the signs, symptoms, diagnosis, and disease management of
lupus.
``(d) Integration With Other Programs.--To the extent practicable
and appropriate, the Secretary shall integrate efforts under this
section with other programs carried out by the Secretary.
``(e) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section $1,000,000 for each of the
fiscal years 2008 through 2012.''.
<all>
Introduced in House
Introduced in House
Referred to the House Committee on Energy and Commerce.
Referred to the Subcommittee on Health.
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