[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[S. 4717 Introduced in Senate (IS)]

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119th CONGRESS
  2d Session
                                S. 4717

 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 cancers, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                              June 9, 2026

  Mr. Markey (for himself and Ms. Klobuchar) introduced the following 
  bill; which was read twice and referred to the Committee on Health, 
                     Education, Labor, 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 cancers, and for other purposes.

    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 ``Asal Sayas National Strategy on 
Young Adult Cancers Act''.

SEC. 2. FINDINGS.

    Congress finds that--
            (1) cancer is the second most common cause of death in the 
        United States, with over 2,000,000 new cases diagnosed annually 
        and an expected 626,140 cancer deaths in 2026;
            (2) the incidence of cancer in individuals ages 18 to 49 
        (referred to in this section as ``young adults''), has risen 79 
        percent globally between 1990 and 2019, and mortality from 
        cancer in that age group has risen by 28 percent;
            (3) the incidence of young adult cancers is predicted to 
        increase by 30 percent globally from 2019 to 2030;
            (4) each year in the United States, approximately 200,000 
        young adults are diagnosed with cancer and approximately 30,000 
        young adults die from cancer;
            (5) the incidence of cancers in young adult women is now 82 
        percent higher than the incidence of cancers in young adult 
        men, and cancers in young adult women has increased by 51 
        percent since 2002;
            (6) the economic cost in the United States of young adult 
        cancers is estimated at $50,000,000,000 to $80,000,000,000 
        annually, due to costs relating to medical care, out-of-pocket 
        expenses, lost productivity, caregiver burden, and premature 
        deaths;
            (7) rates of young adult cancers are increasing 
        significantly for digestive cancers, including colorectal and 
        pancreatic cancers, lung cancers, gynecological cancers, 
        including cervical, uterine, and ovarian cancers, breast 
        cancers, prostate cancers, testicular cancers, thyroid cancers, 
        melanoma, sarcoma, lymphoma, leukemia, and head and neck 
        cancers;
            (8) colorectal cancers are the leading cause of young adult 
        cancer-related deaths in the United States, and the second-
        leading cause of cancer overall;
            (9) lung cancer is the leading cause of cancer death in 
        both men and women in the United States, and rates are rising 
        among young adults, including for non-smokers, the majority of 
        whom are women;
            (10) some cancers, including colorectal cancers and lung 
        cancers, are more likely to be more advanced at diagnosis and 
        have worse survival rates for young adults than for individuals 
        in other age groups;
            (11) current eligibility criteria for cancer screening, 
        including for colorectal and lung cancers, fail to identify 
        many young adults who develop these diseases;
            (12) young adult cancers have significant short- and long-
        term social and economic impacts on individuals, their 
        families, and society, and are linked to higher risk of long-
        term health problems in survivors;
            (13) the risk factors contributing to young adult cancers 
        remain complex and may include interaction of genetic and 
        biological factors, as well as lifestyle and environmental 
        exposures, making identification of at-risk groups difficult;
            (14) young adults with cancer face an average delay of 7 
        months between symptom onset and treatment, versus 1 month for 
        individuals age 50 and over; and
            (15) barriers to diagnosis for young adult cancers include 
        screening ineligibility linked to age, delay in presentation to 
        primary care after symptom appearance, more frequent 
        misattribution of symptoms to less severe conditions, and delay 
        in referral to a cancer specialist.

SEC. 3. NATIONAL STRATEGY TO ADDRESS YOUNG ADULT CANCERS.

    Section 402 of the Public Health Service Act (42 U.S.C. 282) is 
amended by adding the following:
    ``(p) Asal Sayas National Strategy on Young Adult Cancers.--
            ``(1) In general.--Not later than 18 months after the date 
        of enactment of the Asal Sayas National Strategy on Young Adult 
        Cancers Act, the Director of NIH shall develop and submit to 
        the relevant committees of Congress, and post on the websites 
        of the National Institutes of Health and the clearinghouse 
        established pursuant to paragraph (2)(G), a national strategy 
        to address young adult cancers, to be known as the `Asal Sayas 
        National Strategy on Young Adult Cancers'.
            ``(2) Requirements.--The national strategy under paragraph 
        (1) shall--
                    ``(A) conduct and provide an inventory of current 
                young adult cancer research programs, initiatives, and 
                services across the National Institutes of Health and 
                other Federal agencies;
                    ``(B) develop a national education campaign for the 
                public and health care professionals on the symptoms 
                of, and risk factors for, young adult cancers, which 
                shall--
                            ``(i) identify culturally relevant 
                        strategic priorities and objectives for such 
                        national education campaign;
                            ``(ii) provide education to, and raise 
                        public awareness among, the general public 
                        about symptoms and risk factors for young adult 
                        cancers; and
                            ``(iii) provide education to primary care, 
                        emergency, obstetrics and gynecology, 
                        pulmonary, and gastrointestinal health care 
                        professionals and other health care 
                        professionals regarding the signs, symptoms, 
                        and risk factors for the leading types of young 
                        adult cancers in the United States;
                    ``(C) identify strategic research priorities and 
                objectives across biomedical, behavioral, and 
                environmental research areas, including by--
                            ``(i) conducting an assessment of young 
                        adult cancer research, including areas of 
                        opportunity with respect to basic, clinical, 
                        epidemiologic, and translational research;
                            ``(ii) determining priorities and 
                        objectives to advance the diagnosis, treatment, 
                        cure, and prevention of young adult cancers;
                            ``(iii) evaluating issues relating to 
                        improving access to care for young adults with 
                        cancer;
                            ``(iv) identifying emerging scientific 
                        opportunities, rising public health challenges, 
                        and scientific knowledge gaps; and
                            ``(v) evaluating opportunities for new 
                        technologies to identify risk factors, 
                        biomarkers, and targeted therapies for young 
                        adult cancers;
                    ``(D) review, in carrying out subparagraph (B)--
                            ``(i) disease burden in the United States 
                        of young adult cancers in total and by cancer 
                        type, including the potential for an economic 
                        return on investment to the United States, due 
                        to lives saved, increased productivity, and 
                        decreased medical costs, from funding research, 
                        prevention, screening, diagnostics, treatment, 
                        and cures;
                            ``(ii) differences among young adult 
                        cancers in total and by cancer type among 
                        sociodemographic groups, including by--
                                    ``(I) sex;
                                    ``(II) race and ethnicity;
                                    ``(III) status as a veteran, member 
                                of the Armed Forces, or family member 
                                of a veteran or member of the Armed 
                                Forces;
                                    ``(IV) disability status;
                                    ``(V) professions that may increase 
                                cancer risk; and
                                    ``(VI) Tribal populations, rural 
                                populations, and medically underserved 
                                populations (as defined in section 
                                330(b)(3));
                            ``(iii) multi-institute and multi-agency 
                        priorities, including coordination of research 
                        among the national research institutes, the 
                        national centers, and Federal agencies;
                            ``(iv) barriers to participation in 
                        clinical trials for young adults;
                            ``(v) special needs associated with 
                        treatment among the non-pediatric young adult 
                        population, such as concerns associated with 
                        preserving fertility, mental health issues, and 
                        employment;
                            ``(vi) existing Federal resources, such as 
                        reports, databases, and guidance; and
                            ``(vii) other factors the Director of NIH 
                        determines appropriate, in consultation with 
                        the Director of the National Cancer Institute, 
                        the heads of other national research 
                        institutes, and the heads of Federal agencies;
                    ``(E) provide recommendations with respect to--
                            ``(i) advancing biomedical, lifestyle, and 
                        environmental research into the causes of young 
                        adult cancers, by type of cancer;
                            ``(ii) improving methods for early 
                        detection and screening of young adult cancers, 
                        by type of cancer, including education 
                        campaigns for the public and health care 
                        professionals and resources to increase 
                        awareness of symptoms;
                            ``(iii) improving screening guidance and 
                        the development of new diagnostics with respect 
                        to various types of young adult cancers;
                            ``(iv) reducing barriers to insurance 
                        coverage of screening for young adult cancers;
                            ``(v) 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 adults;
                            ``(vi) applying technologies, including 
                        innovative electronic health record tools, to 
                        identify biomarkers and other risk factors and 
                        to target treatment options for young adult 
                        cancers;
                            ``(vii) applying technologies, including 
                        innovative electronic health record tools, to 
                        increase the use by health care providers of 
                        recommendations for identification of symptoms, 
                        family history, hereditary syndromes, or other 
                        risk factors that could contribute to the young 
                        adult cancer diagnosis;
                            ``(viii) evaluating current therapies and 
                        developing new treatments, including biomarker 
                        identification and precision medicine, for 
                        young adult cancers;
                            ``(ix) addressing and disseminating 
                        prevention strategies;
                            ``(x) addressing barriers to conducting 
                        research regarding young adult cancers;
                            ``(xi) addressing barriers to participation 
                        in clinical trials for young adults with 
                        cancer;
                            ``(xii) increasing efforts to improve 
                        medical education and knowledge among health 
                        care professionals of young adult cancers, 
                        including risk factors, symptoms, screening and 
                        early detection techniques, prevention, and 
                        treatment options;
                            ``(xiii) establishing within the National 
                        Cancer Institute a National Centers of 
                        Excellence for Young Adult Cancers program (or 
                        a comparable alternative) that would create and 
                        support hubs across the United States for 
                        research, clinical care, and public and 
                        professional education;
                            ``(xiv) supporting the psychosocial needs 
                        of individuals undergoing treatment for young 
                        adult cancers, including family, fertility 
                        preservation, and work-related issues;
                            ``(xv) addressing the needs of caregivers 
                        of young adult cancer patients; and
                            ``(xvi) other topics, as determined by the 
                        Director of NIH, in consultation with the 
                        Federal Coordinating Committee on Young Adult 
                        Cancers established under paragraph (3)(A);
                    ``(F) describe opportunities for collaboration with 
                Federal departments and agencies and the private 
                sector, as appropriate; and
                    ``(G) establish an online Federal clearinghouse to 
                provide to the general public, patients, caregivers, 
                health care professionals, and researchers information 
                on young adult cancers, with resources, including--
                            ``(i) information on risk factors, 
                        symptoms, and screening eligibility;
                            ``(ii) information regarding research 
                        findings, clinical trials, and research funding 
                        opportunities; and
                            ``(iii) clinical practice guidelines for 
                        health care professionals.
            ``(3) Federal coordinating committee on young adult 
        cancers.--
                    ``(A) In general.--In carrying out this subsection, 
                the Director of NIH shall establish a committee, to be 
                known as the `Federal Coordinating Committee on Young 
                Adult Cancers'--
                            ``(i) to consult and provide input on the 
                        development of the national strategy under 
                        paragraph (1); and
                            ``(ii) not less frequently than once every 
                        2 years, to submit to the relevant committees 
                        of Congress a progress report regarding the 
                        implementation of such national strategy.
                    ``(B) Membership.--The coordinating committee 
                established under subparagraph (A) shall be composed 
                of--
                            ``(i) the Director of the National Cancer 
                        Institute;
                            ``(ii) the heads of other national research 
                        institutes, national centers, and offices 
                        within the National Institutes of Health, as 
                        determined appropriate by the Director of NIH, 
                        including the National Heart, Lung, and Blood 
                        Institute, the National Institute of Diabetes 
                        and Digestive and Kidney Diseases, the Eunice 
                        Kennedy Shriver National Institute of Child 
                        Health and Human Development, the National 
                        Human Genome Research Institute, the National 
                        Institute of Mental Health, the Office of 
                        Research on Women's Health, and the National 
                        Institute on Minority Health and Health 
                        Disparities;
                            ``(iii) the Director of the Office of 
                        Science and Technology Policy;
                            ``(iv) the Secretary of Health and Human 
                        Services;
                            ``(v) the Director of the Centers for 
                        Disease Control and Prevention;
                            ``(vi) the Administrator of the Centers for 
                        Medicare & Medicaid Services;
                            ``(vii) the Commissioner of Food and Drugs;
                            ``(viii) the Assistant Secretary for Mental 
                        Health and Substance Use;
                            ``(ix) the Director of the Indian Health 
                        Service;
                            ``(x) the Director of the Office of 
                        Minority Health of the Department of Health and 
                        Human Services;
                            ``(xi) the Director of the Office on 
                        Women's Health of the Department of Health and 
                        Human Services;
                            ``(xii) the Director of the Agency for 
                        Healthcare Research and Quality;
                            ``(xiii) the Director of the Advanced 
                        Research Projects Agency-Health;
                            ``(xiv) the Assistant Secretary of Defense 
                        for Health Affairs;
                            ``(xv) the Under Secretary for Health for 
                        the Department of Veterans Affairs;
                            ``(xvi) the Director of the Office of 
                        Science of the Department of Energy;
                            ``(xvii) the Director of the National 
                        Science Foundation;
                            ``(xviii) the Administrator of the 
                        Environmental Protection Agency;
                            ``(xix) representatives of patient advocacy 
                        groups;
                            ``(xx) representatives of academic research 
                        institutions;
                            ``(xxi) representatives of the biomedical 
                        industry;
                            ``(xxii) representatives and leaders of 
                        community health institutions; and
                            ``(xxiii) others, as determined by the 
                        Director.
            ``(4) Definitions.--In this subsection:
                    ``(A) Relevant committees of congress.--The term 
                `relevant committees of Congress' means--
                            ``(i) the Committee on Health, Education, 
                        Labor, and Pensions of the Senate;
                            ``(ii) the Committee on Finance of the 
                        Senate;
                            ``(iii) the Committee on Appropriations of 
                        the Senate;
                            ``(iv) the Committee on Energy and Commerce 
                        of the House of Representatives;
                            ``(v) the Committee on Ways and Means of 
                        the House of Representatives; and
                            ``(vi) the Committee on Appropriations of 
                        the House of Representatives.
                    ``(B) Young adult.--The term `young adult' means an 
                individual between the ages of 18 and 49.''.
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