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. |