,,ii #aadth ,,congress #b;d ,session ,s4 #bgii ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,april #ad1 #bjaf,mr4 ,menendez 7for himself1 ,ms4 ,murkowski1 ,ms4 ,klobuchar1 ,mr4 ,rubio1 ,mr4 ,reid1 ,mrs4 ,gillibrand1 ,mr4 ,blumenthal1 ,mrs4 ,boxer1 ,mr4 ,franken1 ,mr4 ,mc,cain1 ,mr4 ,schumer1 ,mr4 ,tester1 ,mr4 ,markey1 and ,mr4 ,durbin7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to require the ,secretary of ,health and ,human ,services to develop a voluntary patient registry to collect data on cancer incidence among firefighters4 #a4 ,short title ,this ,act may be cited as the ,firefighter ,cancer ,registry ,act4 #b4 ,findings ,congress finds the following3 7#a7 ,studies conducted since the #aiijs have indicated a strong link between firefighting and an increased risk for several major cancers4 7#b7 ,the cancers identified as most common among firefighters according to these studies include testicular cancer1 which male firefighters are #ajb percent more likely to be diagnosed with1 stomach cancer1 multiple myeloma1 and brain cancer1 among several others4 7#c7 ,the heightened incidence of cancer among firefighters has been attributed to their frequent exposure to a range of harmful substances1 including resultant pyrolysis products1 toxic particulates1 gases and fumes1 metals such as cadmium and lead1 chemical substances such as benzene and vinyl chloride1 and minerals such as asbestos and silicates4 7#d7 ,an extensive #bjad study conducted by the ,national ,institute of ,occupational ,safety and ,health1 over the course of several years and including almost #cj1jjj firefighters1 found that firefighters were at an increased risk of being diagnosed with malignant mesothelioma and found potential links between exposure to fire incidents and heightened risks for lung cancer and leukemia1 among several others4 7#e7 ,past studies examining cancer incidence among firefighters have been limited by the availability and standardization of important epidemiological data1 relatively small sample sizes1 inconsistencies in the operationalization of key terms and metrics1 incomplete employment histories1 and an underrepresentation of minority1 female1 and volunteer firefighters4 7#f7 ,today1 many ,states across the country maintain cancer registries that collect and collate information regarding cancer diagnoses1 demographic information1 and treatment plans4 ,state cancer registries have greatly contributed to overcoming these obstacles by offering centralized repositories of information1 which researchers in the public and private sectors can access when conducting research on cancer risks4 7#g7 ,while these ,state-based cancer registries undoubtedly contribute to furthering research related to assessing cancer incidence among firefighters1 a special purpose national cancer registry would provide researchers and public health agencies with more direct and comprehensive access to the specific set of information they need to conduct more robust1 focused1 and epidemiologically rigorous research on cancer incidence among firefighters4 7#h7 ,efforts to understand cancer incidence among firefighters through a specialized national cancer registry will better inform the kinds of precautions firefighters should take in the future1 improve our understanding of key epidemiological trends1 and potentially lead to the development of more sophisticated safety protocols to lower cancer risks4 #c4 ,patient registry for firefighter cancer incidence 7a7 ,in general ,the ,secretary of ,health and ,human ,services 7referred to in this section as the ,secretary71 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall develop and maintain a voluntary patient registry to collect data on cancer incidence among firefighters4 7b7 ,use of registry ,the patient registry shall be used for the following purposes3 7#a7 ,to establish and improve collection infrastructure and activities related to the nationwide monitoring of the incidence of cancer among firefighters4 7#b7 ,to collect1 consolidate1 store1 and make publicly available epidemiological information related to cancer incidence and trends among firefighters4 7c7 ,relevant data ,in carrying out the voluntary data collection for purposes of inclusion under the patient registry under subsection 7a71 the ,secretary should seek to include the following de-identified information3 7#a7 ,with respect to cancer diagnoses and treatment of firefighters1 de-identified information on-- 7,a7 full detailing of physical examinations and medical history2 7,b7 complete detailing of all relevant diagnostic tests and lab procedures2 7,c7 complete detailing of all pathology and operative reports2 and 7,d7 complete detailing of treatments undergone or planned4 7#b7 ,with respect to individual patient history relating to the incidence of cancer among firefighters1 de-identified information on-- 7,a7 basic demographic information1 including the age of the firefighter involved and age of onset of cancer2 7,b7 a listing of status of the firefighter as either volunteer1 paid-on-call1 or career firefighter2 7,c7 the number of years on the job and details regarding additional employment experience that was performed concurrently with firefighting service or anytime thereafter2 7,d7 7i7 a measure of the number of fire incidents attended and the types of fire incidents 7such as residential house fire or commercial fire72 or 7ii7 in the case of a firefighter who is unable to provide information on such number and types1 an estimate of such number and types based on the method developed under subsection 7d77#c72 and 7,e7 a list of additional risk factors1 including smoking or drug use1 as the ,secretary determines relevant4 7#c7 ,any additional information1 as the ,secretary determines necessary4 7d7 ,methods 7#a7 ,in general ,for the purposes described in subsection 7b71 the ,secretary is authorized to incorporate questions into public health surveys1 questionnaires1 and other databases in existence as of the date of enactment of this ,act4 7#b7 ,ensuring representation of underrepresented groups in registry ,in carrying out this section1 the ,secretary shall take such measures as the ,secretary determines appropriate to encourage the inclusion of data on minority1 female1 and volunteer firefighters in the registry established under this section4 7#c7 ,method to estimate number and type of fire incidents ,for purposes of subsection 7c77#b77;,d71 the ,secretary1 in consultation with the experts described in subsection 7e71 shall develop a reliable and standardized method for estimating the number of fire incidents attended by a firefighter and the types of fire incidents so attended in the case such firefighter is unable to provide such information4 7e7 ,consultation ,the ,secretary shall1 on a regular basis1 seek feedback regarding the utility of the registry established under this section and ways the registry can be improved from non-,federal experts in the following areas3 7#a7 ,public health experts with experience in developing and maintaining cancer registries4 7#b7 ,epidemiologists with experience in studying cancer incidence4 7#c7 ,clinicians with experience in diagnosing and treating cancer incidence4 7#d7 ,active and retired volunteer1 paid-on-call1 and career firefighters and relevant national fire and emergency response organizations4 7f7 ,research availability ,the ,secretary shall develop and make public an approval process for making de-identified cancer registry data submitted for inclusion in the patient registry developed under subsection 7a7 available without a fee for public research purposes4 ,such process shall provide that such data shall be made available for such research purposes only if there is an agreement to make findings1 journal articles1 or other print or web-based publications derived from such research public or available to the relevant stakeholders described in subsection 7e77#d74 7g7 ,privacy ,in carrying out this ,act1 the ,secretary shall apply to the registry developed under subsection 7a7 data security provisions and privacy standards that comply with the best practices of the ,centers for ,disease ,control and ,prevention1 as defined by the ,national ,institute of ,standards and ,technology in ,special ,publication #hjj-cg revision #a1 and the ,,hipaa privacy regulation1 as defined in section #aahj7;b77#c7 of the ,social ,security ,act 7#db ,u4,s4,c4 #acbj;d-#i7;b77#c774 7h7 ,authorization of funds ,to carry out this section1 there are authorized to be appropriated #b1ejj1jjj for each of the fiscal years #bjag through #bjba4