S 76
112th CONGRESS
1st Session
S. 76
To direct the Administrator of the Environmental Protection
Agency to investigate and address cancer and disease clusters, including
in infants and children.
IN THE SENATE OF THE UNITED STATES
January 25 (legislative day, January 5), 2011
Mrs. BOXER (for herself and Mr. CRAPO) introduced the following bill;
which was read twice and referred to the Committee on Environment and
Public Works
A BILL
To direct the Administrator of the Environmental Protection
Agency to investigate and address cancer and disease clusters, including
in infants and children.
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 `Strengthening Protections for Children
and Communities From Disease Clusters Act'.
SEC. 2. FINDINGS.
(1) children are particularly at risk from environmental pollutants
or toxic substances for various reasons, including because--
(A) the nervous, immune, digestive, and other systems of children
are still developing as the children move though several stages
of rapid growth and development;
(B) exposure to environmental pollutants or toxic substances can
affect prenatal, infant, and childhood growth and development;
(C) children may be less able to detoxify and excrete toxins than
adults;
(D) children eat proportionately more food, drink more fluids, breathe
more air, and play outside more, which means children are more exposed
to environmental pollutants and toxic substances than adults;
(E) children are less able to protect themselves from exposures
to environmental pollutants or toxic substances;
(F) the behavior of children exposes children to different environmental
pollutants and toxic substances than adults;
(G) the natural curiosity and tendency of children to explore leaves
children open to health risks that adults can more easily avoid;
and
(H) the developing brains, reproductive systems, and other organs
of children are more susceptible to permanent disruption that can
result in health problems during the lives of the children;
(2) according to the Department of Health and Human Services, birth
defects are the leading cause of infant death in the first year of
life, accounting for about 20 percent of infant deaths in 2006;
(3) according to the American Cancer Society, cancer is the second
leading cause of death in children, exceeded only by accidents;
(4) according to the Centers for Disease Control and Prevention, an
estimated 1 in 110 children in the United States have an autism spectrum
disorder;
(5) scientific research on environmental, genetic, and other influences
that may affect environmental health is a national priority;
(6) Federal agencies should work to address serious environmental
health problems to better protect children and other individuals in
communities, both large and small, across the United States; and
(7) according to the National Academy of Sciences--
(A) it is in the national interest to place a higher priority on
the health of children;
(B) in the short term, that priority will result in children whose
health and quality of life is improved and who are more ready and
able to learn;
(C) children have important value in their own right and are worthy
of that type of societal commitment;
(D) it is also in the national interest to optimize the health of
children because, in the long term--
(i) the continuing viability of society depends on a citizenry
and a workforce that are properly equipped to be productive and
committed to serving the country; and
(ii) failure to improve the health of children will have a substantial
long-term consequence for the health of the adult population;
and
(E) investing in the health of children is necessary for all of
the reasons described in subparagraphs (A) through (D) and is the
right thing to do.
SEC. 3. PURPOSES.
The purposes of this Act are--
(1) to provide to the Administrator the authority to help conduct
investigations into the potential for environmental pollutants or
toxic substances to cause disease clusters;
(2) to ensure that the Administrator has the authority to undertake
actions to help address existing and potential environmental pollution
and toxic substances that may contribute to the creation of disease
clusters; and
(3) to enable the Administrator to integrate and work in conjunction
with other Federal, State, and local agencies, institutions of higher
education, and the public in investigating and helping to address
the possible causes of disease clusters.
SEC. 4. GOALS.
The goals of this Act are--
(1) to protect and assist pregnant women, infants, children, and other
individuals who have been, are, or could be harmed by, and become
part of, a disease cluster;
(2) to enhance Federal resources, expertise, outreach, transparency,
and accountability in responding to public and State and local government
inquiries about the potential causes of a disease cluster;
(3) to strengthen Federal analytical capacity and coordination, including
with State and local authorities, in the investigation of the potential
causes of disease clusters;
(4) to develop multidisciplinary teams that undertake a systematic,
integrated approach to investigate and help address the potential
causes of disease clusters that State and local officials cannot address
or need assistance in addressing; and
(5) to help facilitate the rapid investigation of potential disease
clusters and actions to address the potential causes of disease clusters.
SEC. 5. DEFINITIONS.
(1) ADMINISTRATOR- The term `Administrator' means the Administrator
of the Environmental Protection Agency.
(2) AGENCY- The term `Agency' means the Environmental Protection Agency.
(3) DIRECTOR- The term `Director' means the Director of the National
Institute of Environmental Health Sciences.
(4) DISEASE CLUSTER- The term `disease cluster' means--
(A) the occurrence of a greater-than-expected number of cases of
a particular disease within a group of individuals, a geographical
area, or a period of time; or
(B) the occurrence of a particular disease in such number of cases,
or meeting such other criteria, as the Administrator, in consultation
with the Administrator of the Agency for Toxic Substances and Disease
Registry and the Director, may determine.
(5) ENVIRONMENTAL POLLUTANTS OR TOXIC SUBSTANCES- The term `environmental
pollutants or toxic substances' includes the substances described
in paragraph (7).
(6) FEDERAL AGENCY- The term `Federal agency' means--
(A) any department, agency, or other instrumentality of the Federal
Government;
(B) any independent agency or establishment of the Federal Government
(including any Government corporation); and
(C) the Government Printing Office.
(7) POTENTIAL CAUSES OF A DISEASE CLUSTER- The term `potential causes
of a disease cluster' includes environmental and public health factors
that could increase the possibility of disease clusters, including
environmental pollutants or toxic substances and sources of those
pollutants and substances, including--
(A) emissions of air pollutants that are regulated under the Clean
Air Act (42 U.S.C. 7401 et seq.); and
(B) water pollutants that are regulated under the Federal Water
Pollution Control Act (33 U.S.C. 1251 et seq.);
(C) a contaminant, as that term is defined in section 1401 of the
Safe Drinking Water Act (42 U.S.C. 300f);
(D) a hazardous substance, as that term is defined in section 101
of the Comprehensive Environmental Response, Compensation, and Liability
Act (42 U.S.C. 9601);
(E) solid waste and hazardous waste, as those terms are defined
in section 1004 of the Solid Waste Disposal Act (42 U.S.C. 6903);
(F) a chemical substance, as that term is defined in section 3 of
the Toxic Substances Control Act (15 U.S.C. 2602);
(G) a substance that is regulated under the Emergency Planning and
Community Right-To-Know Act of 1986 (42 U.S.C. 11001 et seq.); and
(H) any other form of environmental pollution or toxic substance
that is a known or potential cause of an adverse health effect,
including a developmental, reproductive, neurotoxic, or carcinogenic
effect.
(8) REGIONAL RESPONSE CENTER- The term `Regional Response Center'
means a Regional Disease Cluster Information and Response Center established
under section 7.
(9) RESPONSE TEAM- The term `Response Team' means a Regional Disease
Cluster Information and Response Team established under section 7.
(10) SECRETARY- The term `Secretary' means the Secretary of Health
and Human Services.
SEC. 6. GUIDELINES FOR ENVIRONMENTAL INVESTIGATIONS OF DISEASE CLUSTERS.
(1) IN GENERAL- The Administrator, in consultation with the Administrator
of the Agency for Toxic Substances and Disease Registry, the Secretary,
and the Director, shall develop, publish, and periodically update
guidelines that describe a systematic, integrated approach that uses
the best available science to investigate--
(A) 1 or more suspected or potential disease clusters;
(B) environmental pollutants or toxic substances associated with
1 or more suspected or potential disease clusters; or
(C) potential causes of 1 or more disease clusters.
(2) COORDINATION- The Administrator shall ensure that the Office of
Children's Health Protection, in consultation with appropriate advisory
committees, such as the Children's Health Protection Advisory Committee,
has a prominent role on behalf of the Agency in developing and updating
guidelines under paragraph (1).
(b) Requirements- Guidelines developed under this section shall include--
(1) definitions of key concepts and actions;
(2) disease cluster identification and reporting protocols;
(3) standardized methods of reviewing and categorizing data, including
from health surveillance systems and disease cluster reports;
(4) guidance for using, in a health-protective way, an appropriate
epidemiological, statistical, or other approach for the circumstances
of an investigation;
(5) procedures for peer review of key documents by individuals who
have no direct or indirect conflict of interest; and
(6) a description of roles and responsibilities of the Administrator
and the Administrator of the Agency for Toxic Substances and Disease
Registry in conducting investigations described in those guidelines,
in accordance with this Act.
(1) IN GENERAL- Draft guidelines developed under this section shall
be available for public review and comment for a period of not less
than 60 days.
(2) FINAL GUIDELINES- Not later than 1 year after the date of enactment
of this Act, the Administrator, in consultation with the Administrator
of the Agency for Toxic Substances and Disease Registry, the Secretary,
and the Director, shall publish in the Federal Register final guidelines
under this section.
SEC. 7. ENHANCED SUPPORT FOR ENVIRONMENTAL INVESTIGATIONS OF DISEASE
CLUSTERS.
(a) Establishment of Regional Disease Cluster Information and Response
Centers and Teams-
(A) IN GENERAL- The Administrator, in consultation with the Administrator
of the Agency for Toxic Substances and Disease Registry, the Secretary,
and the Director, and other appropriate Federal agencies, shall
establish and operate Regional Disease Cluster Information and Response
Centers and Regional Disease Cluster Information and Response Teams.
(B) PRINCIPAL RESPONSIBILITY- The Administrator shall be principally
responsible for directing, coordinating, and approving Federal efforts
and assistance authorized under this section.
(A) IN GENERAL- The Administrator shall ensure that the Office of
Children's Health Protection, in consultation with appropriate advisory
committees, such as the Children's Health Protection Advisory Committee,
has a prominent role on behalf of the Agency in establishing and
operating the Regional Response Centers and the Response Teams.
(B) GRANTS AND COOPERATIVE AGREEMENTS-
(i) IN GENERAL- The Administrator shall provide support (including
research, program implementation, and operational support activities)
to individuals on Response Teams described in subsection (b) and
Community Disease Cluster Advisory Committees described in subsection
(c) through grants and cooperative agreements with institutions
of higher education that have programs or individuals with demonstrated
expertise in research, training, studies, and technical assistance.
(ii) AUTHORIZATION OF APPROPRIATIONS- There are authorized to
be appropriated to carry out this subparagraph such sums as are
necessary.
(3) TIMING- Not later than 1 year after the date of enactment of this
Act, the Administrator shall establish at least--
(A) 2 Regional Response Centers; and
(1) MEMBERSHIP- Each Response Team shall include individuals who--
(A) have expertise in epidemiology, toxicogenomics, molecular biology,
toxicology, pollution control requirements, data analysis, environmental
health and disease surveillance, exposure assessment, pediatric
health, community outreach and involvement, and other relevant fields;
and
(B) have no direct or indirect conflict of interest.
(2) LEADERSHIP- Each Response Team shall have--
(A) an individual who is the leader of the Response Team and who
reports to the Administrator, the Administrator of the Agency for
Toxic Substances and Disease Registry, and the Director; and
(B) an individual who has the skills or experience necessary to
carry out community outreach and involvement activities, including--
(i) the establishment of Community Disease Cluster Advisory Committees
under subsection (c); and
(ii) the facilitation of activities of those Committees.
(A) IN GENERAL- The Administrator, in consultation with the Administrator
of the Agency for Toxic Substances and Disease Registry and the
Director, shall establish the scope of activities for Response Teams
to ensure that the activities are consistent with achieving the
goals of this Act.
(B) REQUIREMENTS- The activities of the Response Teams shall include--
(i) making guidelines, protocols, data, and other relevant information
and expertise available to State and local officials and the public
to assist in efforts--
(I) to investigate suspected or potential disease clusters,
environmental pollutants or toxic substances associated with
those disease clusters, and potential causes of disease clusters;
and
(II) to address potential causes of disease clusters;
(ii) responding rapidly to a petition described in subparagraph
(C) from any person, including a State or local official, regarding
the need--
(I) to investigate suspected or potential disease clusters,
environmental pollutants or toxic substances associated with
those disease clusters, and potential causes of disease clusters;
and
(II) to address the potential causes of disease clusters;
(iii) providing the best available environmental sampling and
laboratory equipment to collect, analyze, and interpret monitoring,
health surveillance, and other relevant information at scales
and timelines appropriate to an action;
(iv) involving community members, in accordance with established
scientific methods and norms (including the preservation of the
confidentiality of individuals), in--
(I) investigations of suspected or potential disease clusters,
environmental pollutants or toxic substances associated with
those disease clusters, or potential causes of disease clusters,
including through--
(aa) environmental exposure assessments;
(bb) biomonitoring activities; and
(cc) community-based participatory research initiatives; and
(II) other efforts to address the potential causes of disease
clusters;
(v) working with State and local agencies--
(I) to help make the use and management of integrated environmental
health data consistent and timely; and
(II) to fill data gaps; and
(vi) investigating suspected or potential disease clusters, environmental
pollutants or toxic substances associated with those disease clusters,
and potential causes of disease clusters, and addressing the potential
causes of disease clusters that the Administrator determines State
and local officials need assistance in investigating or addressing,
or that the Administrator determines should be investigated or
addressed.
(i) IN GENERAL- Any person, including a State or local official,
may submit a petition referred to in subparagraph (B)(ii) to the
Administrator, the Administrator of the Agency for Toxic Substances
and Disease Registry, and the Director that requests that a Response
Team conduct an investigation or take other action to address
the potential causes of disease clusters in accordance with this
Act.
(ii) REQUIREMENTS- Each petition submitted under clause (i) shall
clearly describe the basis for the requested investigation or
action, including any data supporting the request.
(iii) CONSIDERATION- The Administrator, in consultation with the
Administrator of the Agency for Toxic Substances and Disease Registry
and the Director, shall establish criteria for the consideration
of petitions submitted under this section using health-protective
factors, including--
(I) evidence of the release of environmental pollutants or toxic
substances;
(II) the locations in which there appear to be potentially significant
health threats from the potential causes of disease clusters;
(III) cases in which existing data appear to be inadequate to
fully assess the potential risks to public health; and
(IV) such other factors as the Administrator determines are
necessary.
(iv) RESPONSE- Not later than 60 days after the date of receipt
of a petition under clause (iii), the Administrator, in consultation
with the Administrator of the Agency for Toxic Substances and
Disease Registry and the Director, shall provide a written response
that describes--
(I) the investigation or actions that will be undertaken in
response to the petition, including the timeline and basis for
the investigation or actions; and
(II) the reasons for any denial or deferral in providing such
a response.
(v) TIMING OF ISSUANCE OF CRITERIA-
(I) IN GENERAL- The Administrator, in consultation with the
Administrator of the Agency for Toxic Substances and Disease
Registry and the Director, shall provide for public notice of
draft criteria established under this subparagraph for a period
of not less than 60 days.
(II) FINAL CRITERIA- Not later than 1 year after the date of
enactment of this Act, the Administrator, in consultation with
the Administrator of the Agency for Toxic Substances and Disease
Registry and the Director, shall publish in the Federal Register
final criteria required under this subparagraph.
(4) USE OF PUBLICLY AVAILABLE REPORTS- Response Team investigations
and actions shall--
(A) include publicly available reports prepared by the Response
Team that contain statements of facts, findings, and recommendations
for actions, to the extent appropriate; and
(B) be prepared in a manner that preserves the confidentiality of
individuals.
(5) TRANSPARENCY AND ACCOUNTABILITY- Response Team activities shall
include measures to ensure--
(A) transparency and accountability to potentially affected individuals,
State and local officials, the public, and other persons and agencies,
while preserving the confidentiality of individuals;
(B) that consistent, accurate, and meaningful information is provided
to potentially affected individuals, State and local officials,
the public, and other persons and agencies through the use of comprehensive,
community-based communications plans; and
(C) accountability to meeting goals and timetables.
(A) IN GENERAL- The Administrator, in consultation with the Administrator
of the Agency for Toxic Substances and Disease Registry, the Secretary,
and the Director, shall compile and regularly update information
in a comprehensive electronic database that--
(i) is publicly accessible through the Internet;
(ii) provides a centralized location for information relating
to--
(I) disease cluster reports and investigations;
(II) environmental pollutants or toxic substances that are associated
with suspected or potential disease clusters;
(III) illnesses associated with suspected or potential disease
clusters, including locally generated information;
(IV) systematic tracking of environmental pollutants or toxic
substances and illnesses associated with suspected or potential
disease clusters;
(V) actions to help address the potential causes of disease
clusters; and
(VI) any other information that the Administrator determines
to be necessary; and
(iii) facilitates the rapid reporting and analysis of information
described in clause (ii).
(B) CONFIDENTIALITY- A database described in subparagraph (A) shall
be maintained in a manner that preserves the confidentiality of
individuals.
(c) Community Disease Cluster Advisory Committees-
(1) IN GENERAL- The Administrator shall establish Community Disease
Cluster Advisory Committees to provide oversight, guidance, and advice
relating to--
(A) the investigation of suspected and potential disease clusters;
(B) the investigation of environmental pollutants or toxic substances
associated with suspected or potential disease clusters;
(C) the investigation of potential causes of disease clusters;
(D) efforts to address the potential causes of disease clusters;
and
(E) the most effective means of ensuring outreach to and involvement
of community members.
(2) MEMBERSHIP- Membership on Community Disease Cluster Advisory Committees
shall be comprised of representatives that include--
(A) individuals who are or may be impacted by a suspected or potential
disease cluster, and the designee of such an individual who may
participate with or in the place of such an individual;
(B) State or local government health or environmental agencies;
(C) at least 2 individuals, appointed by the Administrator in consultation
with the Administrator of the Agency for Toxic Substances and Disease
Registry and the Director, with demonstrated knowledge of the activities
described in paragraph (1); and
(D) other appropriate individuals, as determined by the Administrator,
in consultation with the Administrator of the Agency for Toxic Substances
and Disease Registry and the Director.
(3) PROHIBITION- No member of a Committee may have any direct or indirect
conflict of interest.
(4) TECHNICAL ASSISTANCE-
(A) IN GENERAL- The Administrator, in consultation with the Administrator
of the Agency for Toxic Substances and Disease Registry and the
Director, may make grants available to any group of individuals
that may be affected by a suspected or potential disease cluster.
(B) USE OF FUNDS- Grants made available under subparagraph (A) may
be used to facilitate active involvement in all aspects of Committee
activities and to assist Committee members in obtaining technical
assistance in interpreting information with regard to--
(i) the investigation of--
(I) suspected or potential disease clusters;
(II) environmental pollutants or toxic substances that are associated
with suspected or potential disease clusters; and
(III) the potential causes of disease clusters;
(ii) addressing the potential causes of disease clusters;
(iii) understanding the health concerns associated with suspected
or potential disease clusters; and
(iv) understanding other scientific and technical issues relating
to the activities of a Regional Response Team and Community Disease
Cluster Advisory Committee, including the potential need for and
interpretation of any biomonitoring of individuals in the area.
(d) Environmental Research and Analysis- The Administrator, in consultation
with the Administrator of the Agency for Toxic Substances and Disease
Registry, the Secretary, and the Director, shall use available authorities
and programs to compile, research, and analyze information generated
by actions authorized under this section, including by--
(1) using those authorities to test environmental pollutants or toxic
substances identified under subsection (b)(6); and
(2) incorporating environmental pollutants or toxic substances identified
under subsection (b)(6) in appropriate national biomonitoring initiatives.
SEC. 8. FEDERAL REPORTS TO CONGRESS.
(a) In General- Not later than 1 year after the date of enactment of
this Act and annually thereafter, the Administrator, in consultation
with the Administrator of the Agency for Toxic Substances and Disease
Registry, the Secretary, and the Director, shall prepare a report that
describes--
(1) the status of activities under this Act to investigate and address
the suspected and potential causes of disease clusters;
(2) environmental pollutants or toxic substances that are associated
with suspected or potential disease clusters;
(3) the potential causes of disease clusters; and
(4) ways to address the potential causes of those disease clusters.
(b) Requirements- The report shall include a description of--
(1) outreach activities to State and local officials and communities;
(2) actions that the Administrator has taken to prioritize the testing
of environmental pollutants or toxic substances;
(3) actions that the Administrator has taken to include environmental
pollutants or toxic substances identified under section 7(b)(7) in
appropriate national biomonitoring initiatives;
(4) actions that the Administrator is taking or plans to take to address
problems in implementing this Act;
(5) actions that the Secretary is taking or plans to take to address
problems in implementing this Act;
(6) actions that the Administrator of the Agency for Toxic Substances
and Disease Registry has undertaken or is considering taking with
respect to any disease clusters under subparagraphs (D) and (E) of
section 104(i)(1) of Comprehensive Environmental Response, Compensation,
and Liability Act (42 U.S.C. 9604(i)(1)) and other provisions of that
section;
(7) actions that the Director is taking or plans to take to address
problems in implementing this Act; and
(8) other relevant information.
(c) Submission and Availability- The Administrator shall--
(1) submit the report under this subsection to--
(A) the Committees on Environment and Public Works and Health, Education,
Labor, and Pensions of the Senate; and
(B) the Committee on Energy and Commerce of the House of Representatives;
and
(2) make the report available to the public.
SEC. 9. AUTHORIZATION OF APPROPRIATIONS.
There are authorized to be appropriated such sums as are necessary to
carry out this Act.
SEC. 10. EFFECT ON OTHER LAW.
Nothing in this Act modifies, limits, or otherwise affects the application
of, or obligation to comply with, any law, including any environmental
or public health law.
END
