,,ii #aacth ,,congress #ast ,session ,s4 #ej ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,january #bb 7legislative day1 ,january #c71 #bjac ,mrs4 ,boxer 7for herself and ,mr4 ,crapo7 introduced the following bill2 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 clusters1 including in infants and children4 #a4 ,short title ,this ,act may be cited as the ,strengthening ,protections for ,children and ,communities ,from ,disease ,clusters ,act4 #b4 ,findings ,congress finds that-- 7#a7 children are particularly at risk from environmental pollutants or toxic substances for various reasons1 including because-- 7,a7 the nervous1 immune1 digestive1 and other systems of children are still developing as the children move though several stages of rapid growth and development2 7,b7 exposure to environmental pollutants or toxic substances can affect prenatal1 infant1 and childhood growth and development2 7,c7 children may be less able to detoxify and excrete toxins than adults2 7,d7 children eat proportionately more food1 drink more fluids1 breathe more air1 and play outside more1 which means children are more exposed to environmental pollutants and toxic substances than adults2 7,e7 children are less able to protect themselves from exposures to environmental pollutants or toxic substances2 7,f7 the behavior of children exposes children to different environmental pollutants and toxic substances than adults2 7,g7 the natural curiosity and tendency of children to explore leaves children open to health risks that adults can more easily avoid2 and 7,h7 the developing brains1 reproductive systems1 and other organs of children are more susceptible to permanent disruption that can result in health problems during the lives of the children2 7#b7 according to the ,department of ,health and ,human ,services1 birth defects are the leading cause of infant death in the first year of life1 accounting for about #bj percent of infant deaths in #bjjf2 7#c7 according to the ,american ,cancer ,society1 cancer is the second leading cause of death in children1 exceeded only by accidents2 7#d7 according to the ,centers for ,disease ,control and ,prevention1 an estimated #a in #aaj children in the ,united ,states have an autism spectrum disorder2 7#e7 scientific research on environmental1 genetic1 and other influences that may affect environmental health is a national priority2 7#f7 ,federal agencies should work to address serious environmental health problems to better protect children and other individuals in communities1 both large and small1 across the ,united ,states2 and 7#g7 according to the ,national ,academy of ,sciences-- 7,a7 it is in the national interest to place a higher priority on the health of children2 7,b7 in the short term1 that priority will result in children whose health and quality of life is improved and who are more ready and able to learn2 7,c7 children have important value in their own right and are worthy of that type of societal commitment2 7,d7 it is also in the national interest to optimize the health of children because1 in the long term-- 7i7 the continuing viability of society depends on a citizenry and a workforce that are properly equipped to be productive and committed to serving the country2 and 7ii7 failure to improve the health of children will have a substantial long-term consequence for the health of the adult population2 and 7,e7 investing in the health of children is necessary for all of the reasons described in subparagraphs 7,a7 through 7,d7 and is the right thing to do4 #c4 ,purposes ,the purposes of this ,act are-- 7#a7 to provide to the ,administrator the authority to help conduct investigations into the potential for environmental pollutants or toxic substances to cause disease clusters2 7#b7 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 clusters2 and 7#c7 to enable the ,administrator to integrate and work in conjunction with other ,federal1 ,state1 and local agencies1 institutions of higher education1 and the public in investigating and helping to address the possible causes of disease clusters4 #d4 ,goals ,the goals of this ,act are-- 7#a7 to protect and assist pregnant women1 infants1 children1 and other individuals who have been1 are1 or could be harmed by1 and become part of1 a disease cluster2 7#b7 to enhance ,federal resources1 expertise1 outreach1 transparency1 and accountability in responding to public and ,state and local government inquiries about the potential causes of a disease cluster2 7#c7 to strengthen ,federal analytical capacity and coordination1 including with ,state and local authorities1 in the investigation of the potential causes of disease clusters2 7#d7 to develop multidisciplinary teams that undertake a systematic1 integrated approach to investigate and help address the potential causes of disease clusters that ,state and local officials cannot address or need assistance in addressing2 and 7#e7 to help facilitate the rapid investigation of potential disease clusters and actions to address the potential causes of disease clusters4 #e4 ,definitions ,in this ,act3 7#a7 ,administrator ,the term ,administrator means the ,administrator of the ,environmental ,protection ,agency4 7#b7 ,agency ,the term ,agency means the ,environmental ,protection ,agency4 7#c7 ,director ,the term ,director means the ,director of the ,national ,institute of ,environmental ,health ,sciences4 7#d7 ,disease cluster ,the term disease cluster means-- 7,a7 the occurrence of a greater-than-expected number of cases of a particular disease within a group of individuals1 a geographical area1 or a period of time2 or 7,b7 the occurrence of a particular disease in such number of cases1 or meeting such other criteria1 as the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry and the ,director1 may determine4 7#e7 ,environmental pollutants or toxic substances ,the term environmental pollutants or toxic substances includes the substances described in paragraph 7#g74 7#f7 ,federal agency ,the term ,federal agency means-- 7,a7 any department1 agency1 or other instrumentality of the ,federal ,government2 7,b7 any independent agency or establishment of the ,federal ,government 7including any ,government corporation72 and 7,c7 the ,government ,printing ,office4 7#g7 ,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 clusters1 including environmental pollutants or toxic substances and sources of those pollutants and substances1 including-- 7,a7 emissions of air pollutants that are regulated under the ,clean ,air ,act 7#db ,u4,s4,c4 #gdja et seq472 7,b7 water pollutants that are regulated under the ,federal ,water ,pollution ,control ,act 7#cc ,u4,s4,c4 #abea et seq472 7,c7 a contaminant1 as that term is defined in section #adja of the ,safe ,drinking ,water ,act 7#db ,u4,s4,c4 #cjj;f72 7,d7 a hazardous substance1 as that term is defined in section #aja of the ,comprehensive ,environmental ,response1 ,compensation1 and ,liability ,act 7#db ,u4,s4,c4 #ifja72 7,e7 solid waste and hazardous waste1 as those terms are defined in section #ajjd of the ,solid ,waste ,disposal ,act 7#db ,u4,s4,c4 #fijc72 7,f7 a chemical substance1 as that term is defined in section #c of the ,toxic ,substances ,control ,act 7#ae ,u4,s4,c4 #bfjb72 7,g7 a substance that is regulated under the ,emergency ,planning and ,community ,right-,to-,know ,act of #aihf 7#db ,u4,s4,c4 #aajja et seq472 and 7,h7 any other form of environmental pollution or toxic substance that is a known or potential cause of an adverse health effect1 including a developmental1 reproductive1 neurotoxic1 or carcinogenic effect4 7#h7 ,regional ,response ,center ,the term ,regional ,response ,center means a ,regional ,disease ,cluster ,information and ,response ,center established under section #g4 7#i7 ,response ,team ,the term ,response ,team means a ,regional ,disease ,cluster ,information and ,response ,team established under section #g4 7#aj7 ,secretary ,the term ,secretary means the ,secretary of ,health and ,human ,services4 #f4 ,guidelines for environmental investigations of disease clusters 7a7 ,establishment 7#a7 ,in general ,the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry1 the ,secretary1 and the ,director1 shall develop1 publish1 and periodically update guidelines that describe a systematic1 integrated approach that uses the best available science to investigate-- 7,a7 #a or more suspected or potential disease clusters2 7,b7 environmental pollutants or toxic substances associated with #a or more suspected or potential disease clusters2 or 7,c7 potential causes of #a or more disease clusters4 7#b7 ,coordination ,the ,administrator shall ensure that the ,office of ,children's ,health ,protection1 in consultation with appropriate advisory committees1 such as the ,children's ,health ,protection ,advisory ,committee1 has a prominent role on behalf of the ,agency in developing and updating guidelines under paragraph 7#a74 7b7 ,requirements ,guidelines developed under this section shall include-- 7#a7 definitions of key concepts and actions2 7#b7 disease cluster identification and reporting protocols2 7#c7 standardized methods of reviewing and categorizing data1 including from health surveillance systems and disease cluster reports2 7#d7 guidance for using1 in a health-protective way1 an appropriate epidemiological1 statistical1 or other approach for the circumstances of an investigation2 7#e7 procedures for peer review of key documents by individuals who have no direct or indirect conflict of interest2 and 7#f7 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 guidelines1 in accordance with this ,act4 7c7 ,timing 7#a7 ,in general ,draft guidelines developed under this section shall be available for public review and comment for a period of not less than #fj days4 7#b7 ,final guidelines ,not later than #a year after the date of enactment of this ,act1 the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry1 the ,secretary1 and the ,director1 shall publish in the ,federal ,register final guidelines under this section4 #g4 ,enhanced support for environmental investigations of disease clusters 7a7 ,establishment of ,regional ,disease ,cluster ,information and ,response ,centers and ,teams 7#a7 ,establishment 7,a7 ,in general ,the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry1 the ,secretary1 and the ,director1 and other appropriate ,federal agencies1 shall establish and operate ,regional ,disease ,cluster ,information and ,response ,centers and ,regional ,disease ,cluster ,information and ,response ,teams4 7,b7 ,principal responsibility ,the ,administrator shall be principally responsible for directing1 coordinating1 and approving ,federal efforts and assistance authorized under this section4 7#b7 ,coordination 7,a7 ,in general ,the ,administrator shall ensure that the ,office of ,children's ,health ,protection1 in consultation with appropriate advisory committees1 such as the ,children's ,health ,protection ,advisory ,committee1 has a prominent role on behalf of the ,agency in establishing and operating the ,regional ,response ,centers and the ,response ,teams4 7,b7 ,grants and cooperative agreements 7i7 ,in general ,the ,administrator shall provide support 7including research1 program implementation1 and operational support activities7 to individuals on ,response ,teams described in subsection 7b7 and ,community ,disease ,cluster ,advisory ,committees described in subsection 7c7 through grants and cooperative agreements with institutions of higher education that have programs or individuals with demonstrated expertise in research1 training1 studies1 and technical assistance4 7ii7 ,authorization of appropriations ,there are authorized to be appropriated to carry out this subparagraph such sums as are necessary4 7#c7 ,timing ,not later than #a year after the date of enactment of this ,act1 the ,administrator shall establish at least-- 7,a7 #b ,regional ,response ,centers2 and 7,b7 #b ,response ,teams4 7b7 ,response ,teams 7#a7 ,membership ,each ,response ,team shall include individuals who-- 7,a7 have expertise in epidemiology1 toxicogenomics1 molecular biology1 toxicology1 pollution control requirements1 data analysis1 environmental health and disease surveillance1 exposure assessment1 pediatric health1 community outreach and involvement1 and other relevant fields2 and 7,b7 have no direct or indirect conflict of interest4 7#b7 ,leadership ,each ,response ,team shall have-- 7,a7 an individual who is the leader of the ,response ,team and who reports to the ,administrator1 the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry1 and the ,director2 and 7,b7 an individual who has the skills or experience necessary to carry out community outreach and involvement activities1 including-- 7i7 the establishment of ,community ,disease ,cluster ,advisory ,committees under subsection 7c72 and 7ii7 the facilitation of activities of those ,committees4 7#c7 ,activities 7,a7 ,in general ,the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry and the ,director1 shall establish the scope of activities for ,response ,teams to ensure that the activities are consistent with achieving the goals of this ,act4 7,b7 ,requirements ,the activities of the ,response ,teams shall include-- 7i7 making guidelines1 protocols1 data1 and other relevant information and expertise available to ,state and local officials and the public to assist in efforts-- 7,i7 to investigate suspected or potential disease clusters1 environmental pollutants or toxic substances associated with those disease clusters1 and potential causes of disease clusters2 and 7,,ii7 to address potential causes of disease clusters2 7ii7 responding rapidly to a petition described in subparagraph 7,c7 from any person1 including a ,state or local official1 regarding the need-- 7,i7 to investigate suspected or potential disease clusters1 environmental pollutants or toxic substances associated with those disease clusters1 and potential causes of disease clusters2 and 7,,ii7 to address the potential causes of disease clusters2 7iii7 providing the best available environmental sampling and laboratory equipment to collect1 analyze1 and interpret monitoring1 health surveillance1 and other relevant information at scales and timelines appropriate to an action2 7iv7 involving community members1 in accordance with established scientific methods and norms 7including the preservation of the confidentiality of individuals71 in-- 7,i7 investigations of suspected or potential disease clusters1 environmental pollutants or toxic substances associated with those disease clusters1 or potential causes of disease clusters1 including through-- 7aa7 environmental exposure assessments2 7bb7 biomonitoring activities2 and 7cc7 community-based participatory research initiatives2 and 7,,ii7 other efforts to address the potential causes of disease clusters2 7v7 working with ,state and local agencies-- 7,i7 to help make the use and management of integrated environmental health data consistent and timely2 and 7,,ii7 to fill data gaps2 and 7vi7 investigating suspected or potential disease clusters1 environmental pollutants or toxic substances associated with those disease clusters1 and potential causes of disease clusters1 and addressing the potential causes of disease clusters that the ,administrator determines ,state and local officials need assistance in investigating or addressing1 or that the ,administrator determines should be investigated or addressed4 7,c7 ,petition 7i7 ,in general ,any person1 including a ,state or local official1 may submit a petition referred to in subparagraph 7,b77ii7 to the ,administrator1 the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry1 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 ,act4 7ii7 ,requirements ,each petition submitted under clause 7i7 shall clearly describe the basis for the requested investigation or action1 including any data supporting the request4 7iii7 ,consideration ,the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry and the ,director1 shall establish criteria for the consideration of petitions submitted under this section using health-protective factors1 including-- 7,i7 evidence of the release of environmental pollutants or toxic substances2 7,,ii7 the locations in which there appear to be potentially significant health threats from the potential causes of disease clusters2 7,,iii7 cases in which existing data appear to be inadequate to fully assess the potential risks to public health2 and 7,,iv7 such other factors as the ,administrator determines are necessary4 7iv7 ,response ,not later than #fj days after the date of receipt of a petition under clause 7iii71 the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry and the ,director1 shall provide a written response that describes-- 7,i7 the investigation or actions that will be undertaken in response to the petition1 including the timeline and basis for the investigation or actions2 and 7,,ii7 the reasons for any denial or deferral in providing such a response4 7v7 ,timing of issuance of criteria 7,i7 ,in general ,the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry and the ,director1 shall provide for public notice of draft criteria established under this subparagraph for a period of not less than #fj days4 7,,ii7 ,final criteria ,not later than #a year after the date of enactment of this ,act1 the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry and the ,director1 shall publish in the ,federal ,register final criteria required under this subparagraph4 7#d7 ,use of publicly available reports ,response ,team investigations and actions shall-- 7,a7 include publicly available reports prepared by the ,response ,team that contain statements of facts1 findings1 and recommendations for actions1 to the extent appropriate2 and 7,b7 be prepared in a manner that preserves the confidentiality of individuals4 7#e7 ,transparency and accountability ,response ,team activities shall include measures to ensure-- 7,a7 transparency and accountability to potentially affected individuals1 ,state and local officials1 the public1 and other persons and agencies1 while preserving the confidentiality of individuals2 7,b7 that consistent1 accurate1 and meaningful information is provided to potentially affected individuals1 ,state and local officials1 the public1 and other persons and agencies through the use of comprehensive1 community-based communications plans2 and 7,c7 accountability to meeting goals and timetables4 7#f7 ,database 7,a7 ,in general ,the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry1 the ,secretary1 and the ,director1 shall compile and regularly update information in a comprehensive electronic database that-- 7i7 is publicly accessible through the ,internet2 7ii7 provides a centralized location for information relating to-- 7,i7 disease cluster reports and investigations2 7,,ii7 environmental pollutants or toxic substances that are associated with suspected or potential disease clusters2 7,,iii7 illnesses associated with suspected or potential disease clusters1 including locally generated information2 7,,iv7 systematic tracking of environmental pollutants or toxic substances and illnesses associated with suspected or potential disease clusters2 7,v7 actions to help address the potential causes of disease clusters2 and 7,,vi7 any other information that the ,administrator determines to be necessary2 and 7iii7 facilitates the rapid reporting and analysis of information described in clause 7ii74 7,b7 ,confidentiality ,a database described in subparagraph 7,a7 shall be maintained in a manner that preserves the confidentiality of individuals4 7c7 ,community ,disease ,cluster ,advisory ,committees 7#a7 ,in general ,the ,administrator shall establish ,community ,disease ,cluster ,advisory ,committees to provide oversight1 guidance1 and advice relating to-- 7,a7 the investigation of suspected and potential disease clusters2 7,b7 the investigation of environmental pollutants or toxic substances associated with suspected or potential disease clusters2 7,c7 the investigation of potential causes of disease clusters2 7,d7 efforts to address the potential causes of disease clusters2 and 7,e7 the most effective means of ensuring outreach to and involvement of community members4 7#b7 ,membership ,membership on ,community ,disease ,cluster ,advisory ,committees shall be comprised of representatives that include-- 7,a7 individuals who are or may be impacted by a suspected or potential disease cluster1 and the designee of such an individual who may participate with or in the place of such an individual2 7,b7 ,state or local government health or environmental agencies2 7,c7 at least #b individuals1 appointed by the ,administrator in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry and the ,director1 with demonstrated knowledge of the activities described in paragraph 7#a72 and 7,d7 other appropriate individuals1 as determined by the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry and the ,director4 7#c7 ,prohibition ,no member of a ,committee may have any direct or indirect conflict of interest4 7#d7 ,technical ,assistance 7,a7 ,in general ,the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry and the ,director1 may make grants available to any group of individuals that may be affected by a suspected or potential disease cluster4 7,b7 ,use of funds ,grants made available under subparagraph 7,a7 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-- 7i7 the investigation of-- 7,i7 suspected or potential disease clusters2 7,,ii7 environmental pollutants or toxic substances that are associated with suspected or potential disease clusters2 and 7,,iii7 the potential causes of disease clusters2 7ii7 addressing the potential causes of disease clusters2 7iii7 understanding the health concerns associated with suspected or potential disease clusters2 and 7iv7 understanding other scientific and technical issues relating to the activities of a ,regional ,response ,team and ,community ,disease ,cluster ,advisory ,committee1 including the potential need for and interpretation of any biomonitoring of individuals in the area4 7d7 ,environmental research and analysis ,the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry1 the ,secretary1 and the ,director1 shall use available authorities and programs to compile1 research1 and analyze information generated by actions authorized under this section1 including by-- 7#a7 using those authorities to test environmental pollutants or toxic substances identified under subsection 7b77#f72 and 7#b7 incorporating environmental pollutants or toxic substances identified under subsection 7b77#f7 in appropriate national biomonitoring initiatives4 #h4 ,federal reports to ,congress 7a7 ,in general ,not later than #a year after the date of enactment of this ,act and annually thereafter1 the ,administrator1 in consultation with the ,administrator of the ,agency for ,toxic ,substances and ,disease ,registry1 the ,secretary1 and the ,director1 shall prepare a report that describes-- 7#a7 the status of activities under this ,act to investigate and address the suspected and potential causes of disease clusters2 7#b7 environmental pollutants or toxic substances that are associated with suspected or potential disease clusters2 7#c7 the potential causes of disease clusters2 and 7#d7 ways to address the potential causes of those disease clusters4 7b7 ,requirements ,the report shall include a description of-- 7#a7 outreach activities to ,state and local officials and communities2 7#b7 actions that the ,administrator has taken to prioritize the testing of environmental pollutants or toxic substances2 7#c7 actions that the ,administrator has taken to include environmental pollutants or toxic substances identified under section #g7;b77#g7 in appropriate national biomonitoring initiatives2 7#d7 actions that the ,administrator is taking or plans to take to address problems in implementing this ,act2 7#e7 actions that the ,secretary is taking or plans to take to address problems in implementing this ,act2 7#f7 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 7,d7 and 7,e7 of section #ajd7;i77#a7 of ,comprehensive ,environmental ,response1 ,compensation1 and ,liability ,act 7#db ,u4,s4,c4 #ifjd7;i77#a77 and other provisions of that section2 7#g7 actions that the ,director is taking or plans to take to address problems in implementing this ,act2 and 7#h7 other relevant information4 7c7 ,submission and availability ,the ,administrator shall-- 7#a7 submit the report under this subsection to-- 7,a7 the ,committees on ,environment and ,public ,works and ,health1 ,education1 ,labor1 and ,pensions of the ,senate2 and 7,b7 the ,committee on ,energy and ,commerce of the ,house of ,representatives2 and 7#b7 make the report available to the public4 #i4 ,authorization of appropriations ,there are authorized to be appropriated such sums as are necessary to carry out this ,act4 #aj4 ,effect on other law ,nothing in this ,act modifies1 limits1 or otherwise affects the application of1 or obligation to comply with1 any law1 including any environmental or public health law4