,,ii #aaith ,,congress #b;d ,session ,s4 #dgag ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,june #i1 #bjbf,mr4 ,markey 7for himself and ,ms4 ,klobuchar7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to amend the ,public ,health ,service ,act to require the ,director of the ,national ,institutes of ,health to develop a national strategy to address young adult cancers1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,asal ,sayas ,national ,strategy on ,young ,adult ,cancers ,act4 #b4 ,findings ,congress finds that-- 7#a7 cancer is the second most common cause of death in the ,united ,states1 with over #b1jjj1jjj new cases diagnosed annually and an expected #fbf1adj cancer deaths in #bjbf2 7#b7 the incidence of cancer in individuals ages #ah to #di 7referred to in this section as young adults71 has risen #gi percent globally between #aiij and #bjai1 and mortality from cancer in that age group has risen by #bh percent2 7#c7 the incidence of young adult cancers is predicted to increase by #cj percent globally from #bjai to #bjcj2 7#d7 each year in the ,united ,states1 approximately #bjj1jjj young adults are diagnosed with cancer and approximately #cj1jjj young adults die from cancer2 7#e7 the incidence of cancers in young adult women is now #hb percent higher than the incidence of cancers in young adult men1 and cancers in young adult women has increased by #ea percent since #bjjb2 7#f7 the economic cost in the ,united ,states of young adult cancers is estimated at #ej1jjj1jjj1jjj to #hj1jjj1jjj1jjj annually1 due to costs relating to medical care1 out-of-pocket expenses1 lost productivity1 caregiver burden1 and premature deaths2 7#g7 rates of young adult cancers are increasing significantly for digestive cancers1 including colorectal and pancreatic cancers1 lung cancers1 gynecological cancers1 including cervical1 uterine1 and ovarian cancers1 breast cancers1 prostate cancers1 testicular cancers1 thyroid cancers1 melanoma1 sarcoma1 lymphoma1 leukemia1 and head and neck cancers2 7#h7 colorectal cancers are the leading cause of young adult cancer-related deaths in the ,united ,states1 and the second-leading cause of cancer overall2 7#i7 lung cancer is the leading cause of cancer death in both men and women in the ,united ,states1 and rates are rising among young adults1 including for non-smokers1 the majority of whom are women2 7#aj7 some cancers1 including colorectal cancers and lung cancers1 are more likely to be more advanced at diagnosis and have worse survival rates for young adults than for individuals in other age groups2 7#aa7 current eligibility criteria for cancer screening1 including for colorectal and lung cancers1 fail to identify many young adults who develop these diseases2 7#ab7 young adult cancers have significant short- and long-term social and economic impacts on individuals1 their families1 and society1 and are linked to higher risk of long-term health problems in survivors2 7#ac7 the risk factors contributing to young adult cancers remain complex and may include interaction of genetic and biological factors1 as well as lifestyle and environmental exposures1 making identification of at-risk groups difficult2 7#ad7 young adults with cancer face an average delay of #g months between symptom onset and treatment1 versus #a month for individuals age #ej and over2 and 7#ae7 barriers to diagnosis for young adult cancers include screening ineligibility linked to age1 delay in presentation to primary care after symptom appearance1 more frequent misattribution of symptoms to less severe conditions1 and delay in referral to a cancer specialist4 #c4 ,national strategy to address young adult cancers ,section #djb of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhb7 is amended by adding the following3 7p7 ,asal ,sayas ,national ,strategy on ,young ,adult ,cancers 7#a7 ,in general ,not later than #ah months after the date of enactment of the ,asal ,sayas ,national ,strategy on ,young ,adult ,cancers ,act1 the ,director of ,,nih shall develop and submit to the relevant committees of ,congress1 and post on the websites of the ,national ,institutes of ,health and the clearinghouse established pursuant to paragraph 7#b77;,g71 a national strategy to address young adult cancers1 to be known as the ,asal ,sayas ,national ,strategy on ,young ,adult ,cancers4 7#b7 ,requirements ,the national strategy under paragraph 7#a7 shall-- 7,a7 conduct and provide an inventory of current young adult cancer research programs1 initiatives1 and services across the ,national ,institutes of ,health and other ,federal agencies2 7,b7 develop a national education campaign for the public and health care professionals on the symptoms of1 and risk factors for1 young adult cancers1 which shall-- 7i7 identify culturally relevant strategic priorities and objectives for such national education campaign2 7ii7 provide education to1 and raise public awareness among1 the general public about symptoms and risk factors for young adult cancers2 and 7iii7 provide education to primary care1 emergency1 obstetrics and gynecology1 pulmonary1 and gastrointestinal health care professionals and other health care professionals regarding the signs1 symptoms1 and risk factors for the leading types of young adult cancers in the ,united ,states2 7,c7 identify strategic research priorities and objectives across biomedical1 behavioral1 and environmental research areas1 including by-- 7i7 conducting an assessment of young adult cancer research1 including areas of opportunity with respect to basic1 clinical1 epidemiologic1 and translational research2 7ii7 determining priorities and objectives to advance the diagnosis1 treatment1 cure1 and prevention of young adult cancers2 7iii7 evaluating issues relating to improving access to care for young adults with cancer2 7iv7 identifying emerging scientific opportunities1 rising public health challenges1 and scientific knowledge gaps2 and 7v7 evaluating opportunities for new technologies to identify risk factors1 biomarkers1 and targeted therapies for young adult cancers2 7,d7 review1 in carrying out subparagraph 7,b7-- 7i7 disease burden in the ,united ,states of young adult cancers in total and by cancer type1 including the potential for an economic return on investment to the ,united ,states1 due to lives saved1 increased productivity1 and decreased medical costs1 from funding research1 prevention1 screening1 diagnostics1 treatment1 and cures2 7ii7 differences among young adult cancers in total and by cancer type among sociodemographic groups1 including by-- 7,i7 sex2 7,,ii7 race and ethnicity2 7,,iii7 status as a veteran1 member of the ,armed ,forces1 or family member of a veteran or member of the ,armed ,forces2 7,,iv7 disability status2 7,v7 professions that may increase cancer risk2 and 7,,vi7 ,tribal populations1 rural populations1 and medically underserved populations 7as defined in section #ccj7;b77#c772 7iii7 multi-institute and multi-agency priorities1 including coordination of research among the national research institutes1 the national centers1 and ,federal agencies2 7iv7 barriers to participation in clinical trials for young adults2 7v7 special needs associated with treatment among the non-pediatric young adult population1 such as concerns associated with preserving fertility1 mental health issues1 and employment2 7vi7 existing ,federal resources1 such as reports1 databases1 and guidance2 and 7vii7 other factors the ,director of ,,nih determines appropriate1 in consultation with the ,director of the ,national ,cancer ,institute1 the heads of other national research institutes1 and the heads of ,federal agencies2 7,e7 provide recommendations with respect to-- 7i7 advancing biomedical1 lifestyle1 and environmental research into the causes of young adult cancers1 by type of cancer2 7ii7 improving methods for early detection and screening of young adult cancers1 by type of cancer1 including education campaigns for the public and health care professionals and resources to increase awareness of symptoms2 7iii7 improving screening guidance and the development of new diagnostics with respect to various types of young adult cancers2 7iv7 reducing barriers to insurance coverage of screening for young adult cancers2 7v7 ensuring timely reviews of cancer screening recommendations by the ,united ,states ,preventive ,services ,task ,force that assess research findings for cancers that are rising in young adults2 7vi7 applying technologies1 including innovative electronic health record tools1 to identify biomarkers and other risk factors and to target treatment options for young adult cancers2 7vii7 applying technologies1 including innovative electronic health record tools1 to increase the use by health care providers of recommendations for identification of symptoms1 family history1 hereditary syndromes1 or other risk factors that could contribute to the young adult cancer diagnosis2 7viii7 evaluating current therapies and developing new treatments1 including biomarker identification and precision medicine1 for young adult cancers2 7ix7 addressing and disseminating prevention strategies2 7x7 addressing barriers to conducting research regarding young adult cancers2 7xi7 addressing barriers to participation in clinical trials for young adults with cancer2 7xii7 increasing efforts to improve medical education and knowledge among health care professionals of young adult cancers1 including risk factors1 symptoms1 screening and early detection techniques1 prevention1 and treatment options2 7xiii7 establishing within the ,national ,cancer ,institute a ,national ,centers of ,excellence for ,young ,adult ,cancers program 7or a comparable alternative7 that would create and support hubs across the ,united ,states for research1 clinical care1 and public and professional education2 7xiv7 supporting the psychosocial needs of individuals undergoing treatment for young adult cancers1 including family1 fertility preservation1 and work-related issues2 7xv7 addressing the needs of caregivers of young adult cancer patients2 and 7xvi7 other topics1 as determined by the ,director of ,,nih1 in consultation with the ,federal ,coordinating ,committee on ,young ,adult ,cancers established under paragraph 7#c77;,a72 7,f7 describe opportunities for collaboration with ,federal departments and agencies and the private sector1 as appropriate2 and 7,g7 establish an online ,federal clearinghouse to provide to the general public1 patients1 caregivers1 health care professionals1 and researchers information on young adult cancers1 with resources1 including-- 7i7 information on risk factors1 symptoms1 and screening eligibility2 7ii7 information regarding research findings1 clinical trials1 and research funding opportunities2 and 7iii7 clinical practice guidelines for health care professionals4 7#c7 ,federal ,coordinating ,committee on ,young ,adult ,cancers 7,a7 ,in general ,in carrying out this subsection1 the ,director of ,,nih shall establish a committee1 to be known as the ,federal ,coordinating ,committee on ,young ,adult ,cancers-- 7i7 to consult and provide input on the development of the national strategy under paragraph 7#a72 and 7ii7 not less frequently than once every #b years1 to submit to the relevant committees of ,congress a progress report regarding the implementation of such national strategy4 7,b7 ,membership ,the coordinating committee established under subparagraph 7,a7 shall be composed of-- 7i7 the ,director of the ,national ,cancer ,institute2 7ii7 the heads of other national research institutes1 national centers1 and offices within the ,national ,institutes of ,health1 as determined appropriate by the ,director of ,,nih1 including the ,national ,heart1 ,lung1 and ,blood ,institute1 the ,national ,institute of ,diabetes and ,digestive and ,kidney ,diseases1 the ,eunice ,kennedy ,shriver ,national ,institute of ,child ,health and ,human ,development1 the ,national ,human ,genome ,research ,institute1 the ,national ,institute of ,mental ,health1 the ,office of ,research on ,women's ,health1 and the ,national ,institute on ,minority ,health and ,health ,disparities2 7iii7 the ,director of the ,office of ,science and ,technology ,policy2 7iv7 the ,secretary of ,health and ,human ,services2 7v7 the ,director of the ,centers for ,disease ,control and ,prevention2 7vi7 the ,administrator of the ,centers for ,medicare ,medicaid ,services2 7vii7 the ,commissioner of ,food and ,drugs2 7viii7 the ,assistant ,secretary for ,mental ,health and ,substance ,use2 7ix7 the ,director of the ,indian ,health ,service2 7x7 the ,director of the ,office of ,minority ,health of the ,department of ,health and ,human ,services2 7xi7 the ,director of the ,office on ,women's ,health of the ,department of ,health and ,human ,services2 7xii7 the ,director of the ,agency for ,healthcare ,research and ,quality2 7xiii7 the ,director of the ,advanced ,research ,projects ,agency-,health2 7xiv7 the ,assistant ,secretary of ,defense for ,health ,affairs2 7xv7 the ,under ,secretary for ,health for the ,department of ,veterans ,affairs2 7xvi7 the ,director of the ,office of ,science of the ,department of ,energy2 7xvii7 the ,director of the ,national ,science ,foundation2 7xviii7 the ,administrator of the ,environmental ,protection ,agency2 7xix7 representatives of patient advocacy groups2 7xx7 representatives of academic research institutions2 7xxi7 representatives of the biomedical industry2 7xxii7 representatives and leaders of community health institutions2 and 7xxiii7 others1 as determined by the ,director4 7#d7 ,definitions ,in this subsection3 7,a7 ,relevant committees of ,congress ,the term relevant committees of ,congress means-- 7i7 the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate2 7ii7 the ,committee on ,finance of the ,senate2 7iii7 the ,committee on ,appropriations of the ,senate2 7iv7 the ,committee on ,energy and ,commerce of the ,house of ,representatives2 7v7 the ,committee on ,ways and ,means of the ,house of ,representatives2 and 7vi7 the ,committee on ,appropriations of the ,house of ,representatives4 7,b7 ,young adult ,the term young adult means an individual between the ages of #ah and #di4 4