SEC. 226. NATIONAL MESOTHELIOMA RESEARCH AND TREATMENT
PROGRAM.
(a) In General- There is established the National
Mesothelioma Research and Treatment Program (referred to in
this section as the `Program') to investigate and advance
the detection, prevention, treatment, and cure of malignant
mesothelioma.
(b) Mesothelioma Centers-
(1) IN GENERAL- The Administrator shall make available
$1,500,000 from the Fund, and the Director of the National
Institutes of Health shall make available $1,000,000 from
amounts available to the Director, for each of fiscal years
2006 through 2015, for the establishment of each of 10
mesothelioma disease research and treatment centers.
(2) REQUIREMENTS- The Director of the National Institutes of
Health, in consultation with the Medical Advisory Committee,
shall conduct a competitive peer review process to select
sites for the centers described in paragraph (1). The
Director shall ensure that sites selected under this
paragraph are--
(A) geographically distributed throughout the United States
with special consideration given to areas of high incidence
of mesothelioma disease;
(B) closely associated with Department of Veterans Affairs
medical centers, in order to provide research benefits and
care to veterans who have suffered excessively from
mesothelioma;
(C) engaged in exemplary laboratory and clinical mesothelioma
research, including clinical trials, to provide mechanisms
for effective therapeutic treatments, as well as detection
and prevention, particularly in areas of palliation of
disease symptoms and pain management;
(D) participants in the National Mesothelioma Registry and
Tissue Bank under subsection (c) and the annual International
Mesothelioma Symposium under subsection (d)(2)(E);
(E) with respect to research and treatment efforts,
coordinated with other centers and institutions involved in
exemplary mesothelioma research and treatment;
(F) able to facilitate transportation and lodging for
mesothelioma patients, so as to enable patients to
participate in the newest developing treatment protocols, and
to enable the centers to recruit patients in numbers
sufficient to conduct necessary clinical trials; and
(G) nonprofit hospitals, universities, or medical or research
institutions incorporated or organized in the United States.
(c) Mesothelioma Registry and Tissue Bank-
(1) ESTABLISHMENT- The Administrator shall make available
$1,000,000 from the Fund, and the Director of the National
Institutes of Health shall make available $1,000,000 from
amounts available to the Director, for each of fiscal years
2006 through 2015 for the establishment, maintenance, and
operation of a National mesothelioma Registry to collect data
regarding symptoms, pathology, evaluation, treatment,
outcomes, and quality of life and a Tissue Bank to include
the pre- and post- treatment blood (serum and blood cells)
specimens as well as tissue specimens from biopsies and
surgery. Not less than $500,000 of the amount made available
under the preceding sentence in each fiscal year shall be
allocated for the collection and maintenance of tissue
specimens.
(2) REQUIREMENTS- The Director of the National Institutes of
Health, with the advice and consent of the Medical Advisory
Committee, shall conduct a competitive peer review process to
select a site to administer the Registry and Tissue Bank
described in paragraph (1). The Director shall ensure that
the site selected under this paragraph--
(A) is available to all mesothelioma patients and qualifying
physicians throughout the United States;
(B) is subject to all applicable medical and patient privacy
laws and regulations;
(C) is carrying out activities to ensure that data is
accessible via the Internet; and
(D) provides data and tissue samples to qualifying
researchers and physicians who apply for such data in order
to further the understanding, prevention, screening,
diagnosis, or treatment of malignant mesothelioma.
(d) Center for Mesothelioma Education-
(1) ESTABLISHMENT- The Administrator shall make available
$1,000,000 from the Fund, and the Director of the National
Institutes of Health shall make available $1,000,000 from
amounts available to the Director, for each of fiscal years
2006 through 2015 for the establishment, with the advice and
consent of the Medical Advisory Committee, of a Center for
Mesothelioma Education (referred to in this section as the
`Center') to--
(A) promote mesothelioma awareness and education;
(B) assist mesothelioma patients and their family members in
obtaining necessary information; and
(C) work with the centers established under subsection (b) in
advancing mesothelioma research.
(2) ACTIVITIES- The Center shall--
(A) educate the public about the new initiatives contained in
this section through a National Mesothelioma Awareness
Campaign;
(B) develop and maintain a Mesothelioma Educational Resource
Center (referred to in this section as the `MERCI'), that
is accessible via the Internet, to provide mesothelioma
patients, family members, and front-line physicians with
comprehensive, current information on mesothelioma and its
treatment, as well as on the existence of, and general claim
procedures for the Asbestos Injury Claims Resolution Fund;
(C) through the MERCI and otherwise, educate mesothelioma
patients, family members, and front-line physicians about,
and encourage such individuals to participate in, the centers
established under subsection (b), the Registry and the Tissue
Bank;
(D) complement the research efforts of the centers
established under subsection (b) by awarding competitive,
peer-reviewed grants for the training of clinical specialist
fellows in mesothelioma, and for highly innovative,
experimental or pre-clinical research; and
(E) conduct an annual International Mesothelioma Symposium.
(3) REQUIREMENTS- The Center shall--
(A) be a nonprofit corporation under section 501(c)(3) of the
Internal Revenue Code of 1986;
(B) be a separate entity from and not an affiliate of any
hospital, university, or medical or research institution; and
(C) demonstrate a history of program spending that is devoted
specifically to the mission of extending the survival of
current and future mesothelioma patients, including a history
of soliciting, peer reviewing through a competitive process,
and funding research grant applications relating to the
detection, prevention, treatment, and cure of mesothelioma.
(4) CONTRACTS FOR OVERSIGHT- The Director of the National
Institutes of Health may enter into contracts with the Center
for the selection and oversight of the centers established
under subsection (b), or selection of the director of the
Registry and the Tissue Bank under subsection (c) and
oversight of the Registry and the Tissue Bank.
(e) Report and Recommendations- Not later than September 30,
2015, The Director of the National Institutes of Health
shall, after opportunity for public comment and review,
publish and provide to Congress a report and recommendations
on the results achieved and information gained through the
Program, including--
(1) information on the status of mesothelioma as a national
health issue, including--
(A) annual United States incidence and death rate information
and whether such rates are increasing or decreasing;
(B) the average prognosis; and
(C) the effectiveness of treatments and means of prevention;
(2) promising advances in mesothelioma treatment and research
which could be further developed if the Program is
reauthorized; and
(3) a summary of advances in mesothelioma treatment made in
the 10-year period prior to the report and whether those
advances would justify continuation of the Program and
whether it should be reauthorized for an additional 10 years.
(f) Severability- If any provision of this Act, or amendment
made by this Act, or the application of such provision or
amendment to any person or circumstance is held to be
unconstitutional, the remainder of this Act (including this
section), the amendments made by this Act, and the
application of the provisions of such to any person or
circumstance shall not be affected thereby.
(g) Regulations- The Director of the National Institutes of
Health shall promulgate regulations to provide for the
implementation of this section.
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