Hereditary Hemorrhagic Telangiectasia Diagnosis and Treatment Act of 2015

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Hereditary Hemorrhagic 
Telangiectasia Diagnosis and Treatment Act of 2015''.

SEC. 2. FINDINGS.

    The Congress finds as follows:
            (1) Hereditary hemorrhagic telangiectasia (HHT) is a 
        largely undiagnosed or misdiagnosed vascular genetic bleeding 
        disorder resulting in artery-vein malformations (AVMs) which 
        lead to preventable catastrophic and disabling consequences. 
        HHT can cause sudden death at any age, unless detected and 
        treated. Early detection, screening, and use of readily 
        available treatment can prevent premature deaths and long-term 
        health complications resulting from HHT. A person with HHT has 
        the tendency to form blood vessels that lack the capillaries 
        between an artery and vein. HHT often results in spontaneous 
        hemorrhage or stroke from brain or lung AVMs. In addition to 
        hemorrhagic stroke, embolic stroke and brain abscess occur in 
        approximately 30 percent of persons with HHT artery-vein 
        malformations in the lung (due to lack of capillaries between 
        the arterial and venous systems which normally filter out clots 
        and bacteria).
            (2) One in 5,000 American children and adults suffer from 
        HHT.
            (3) Studies have found an increase in morbidity and 
        mortality rates for individuals who suffer from HHT.
            (4) Due to the widespread lack of knowledge, accurate 
        diagnosis, and appropriate intervention, 90 percent of HHT-
        affected families are at risk for preventable, life-
        threatening, and disabling medical incidents such as stroke.
            (5) Early detection, screening, and treatment can prevent 
        premature deaths, spontaneous hemorrhage, hemorrhagic stroke, 
        embolic stroke, brain abscess, and other long-term health care 
        complications resulting from HHT.
            (6) HHT is an important health condition with serious 
        health consequences which are amenable to early identification 
        and diagnosis with suitable tests, and acceptable and available 
        treatments in established treatment centers.
            (7) Timely identification and management of HHT cases is an 
        important public health objective because it will save lives, 
        prevent disability, and reduce direct and indirect health care 
        costs. A recent study found that use of a genetic testing model 
        for HHT diagnosis saves $9.9 million in that screening can be 
        limited to those persons within the family groups who actually 
        have the gene defect, leading to early intervention in those 
        found to have treatable AVMs.
            (8) Without a new program for early detection, screening, 
        and treatment, 14,000 children and adults who suffer from HHT 
        in the population today will suffer premature death and 
        disability.

SEC. 3. PURPOSE.

    The purpose of this Act is to create a federally led and financed 
initiative for early diagnosis and appropriate treatment of hereditary 
hemorrhagic telangiectasia that will--
            (1) reduce the suffering of families;
            (2) prevent premature death and disability; and
            (3) lower health care costs through proven treatment 
        interventions.

SEC. 4. CENTERS FOR DISEASE CONTROL AND PREVENTION.

    Part B of title III of the Public Health Service Act (42 U.S.C. 243 
et seq.) is amended by inserting after section 317T the following:

``SEC. 317U. HEREDITARY HEMORRHAGIC TELANGIECTASIA.

    ``(a) In General.--With respect to hereditary hemorrhagic 
telangiectasia (in this section referred to as `HHT'), the Director of 
the Centers for Disease Control and Prevention (in this section 
referred to as the `Director') shall carry out the following 
activities:
            ``(1) The conduct of surveillance of the prevalence and 
        incidence of HHT as described in subsection (c).
            ``(2) The identification and conduct of investigations to 
        further develop and support guidelines for diagnosis of, and 
        intervention for, HHT, including cost-benefit studies.
            ``(3) The development of a standardized survey and 
        screening tool on family history.
            ``(4) The establishment, in collaboration with a voluntary 
        health organization representing HHT families, of an HHT 
        resource center within the Centers for Disease Control and 
        Prevention to provide comprehensive education on, and 
        disseminate information about, HHT to health professionals, 
        patients, industry, and the public.
            ``(5) The conduct or support of public awareness programs 
        in collaboration with medical, genetic, and professional 
        organizations to improve the education of health professionals 
        about HHT.
    ``(b) Collaborative Approaches.--The Director shall carry out this 
section through collaborative approaches within the National Center on 
Birth Defects and Developmental Disabilities and the Division for Heart 
Disease and Stroke Prevention of the Centers for Disease Control and 
Prevention for clotting and bleeding disorders.
    ``(c) Related Activities.--In carrying out subsection (a), the 
Director shall--
            ``(1) designate and provide funding for a sufficient number 
        of HHT Treatment Centers of Excellence--
                    ``(A) to collect data on the prevalence of, and 
                stroke incidence associated with, HHT; and
                    ``(B) to improve patient access to information, 
                diagnosis, early intervention, and treatment of HHT;
            ``(2) provide data collected under paragraph (1) to the 
        Paul Coverdell National Acute Stroke Registry to facilitate--
                    ``(A) analyses of the natural history of 
                hemorrhagic and embolic stroke in HHT; and
                    ``(B) development of screening and artery-vein 
                malformation treatment guidelines specific to 
                prevention of complications from HHT; and
            ``(3) develop and implement programs, targeted for 
        physicians and health care professional groups likely to be 
        accessed by families with HHT, to increase HHT diagnosis and 
        treatment rates through the--
                    ``(A) establishment of a partnership with HHT 
                Treatment Centers of Excellence designated under 
                paragraph (1) through the creation of a database of 
                patients assessed at such HHT Treatment Centers of 
                Excellence (including with respect to phenotype 
                information, genotype information, transfusion 
                dependence, and radiological findings); and
                    ``(B) inclusion of other medical providers who 
                treat HHT patients.
    ``(d) Eligibility for Designation as an HHT Treatment Center of 
Excellence.--In carrying out subsection (c)(1), the Director may 
designate, as an HHT Treatment Center of Excellence, only academic 
health centers demonstrated to have each of the following:
            ``(1) A team of medical experts capable of providing 
        comprehensive evaluation, treatment, and education to 
        individuals with known or suspected HHT and their health care 
        providers.
            ``(2) Administrative staff with sufficient knowledge to 
        respond to patient inquiries and coordinate patient care in a 
        timely fashion.''.

SEC. 5. ADDITIONAL HEALTH AND HUMAN SERVICES ACTIVITIES.

    With respect to hereditary hemorrhagic telangiectasia (in this 
section referred to as ``HHT''), the Secretary of Health and Human 
Services, acting through the Administrator of the Centers for Medicare 
& Medicaid Services, shall award grants on a competitive basis--
            (1) for an analysis by grantees of the Medicare Provider 
        Analysis and Review (MEDPAR) file to develop preliminary 
        estimates from the Medicare program under title XVIII of the 
        Social Security Act for preventable costs of annual health care 
        expenditures including items, services, and treatments 
        associated with untreated HHT furnished to individuals with 
        HHT, as well as socioeconomic costs such as disability 
        expenditures associated with preventable medical events in this 
        population, who are entitled to benefits under part A of title 
        XVIII of the Social Security Act or enrolled under part B of 
        such title; and
            (2) to make recommendations regarding an enhanced data 
        collection protocol to permit a more precise determination of 
        the total costs described in paragraph (1).

SEC. 6. NATIONAL INSTITUTES OF HEALTH.

    Part B of title IV of the Public Health Service Act (42 U.S.C. 284 
et seq.) is amended by adding at the end the following:

``SEC. 409K. HEREDITARY HEMORRHAGIC TELANGIECTASIA.

    ``(a) HHT Initiative.--
            ``(1) Establishment.--The Secretary shall establish and 
        implement an HHT initiative to assist in coordinating 
        activities to improve early detection, screening, and treatment 
        of people who suffer from HHT. Such initiative shall focus on--
                    ``(A) advancing research on the causes, diagnosis, 
                and treatment of HHT, including through the conduct or 
                support of such research; and
                    ``(B) increasing physician and public awareness of 
                HHT.
            ``(2) Consultation.--In carrying out this subsection, the 
        Secretary shall consult with the Director of the National 
        Institutes of Health and the Director of the Centers for 
        Disease Control and Prevention.
    ``(b) HHT Coordinating Committee.--
            ``(1) Establishment.--Not later than 60 days after the date 
        of enactment of this section, the Secretary, in consultation 
        with the Director of the National Institutes of Health, shall 
        establish a committee to be known as the HHT Coordinating 
        Committee.
            ``(2) Membership.--
                    ``(A) In general.--The members of the Committee 
                shall be appointed by the Secretary, in consultation 
                with the Director of the National Institutes of Health, 
                and shall consist of 12 individuals who are experts in 
                HHT or arteriovenous malformation (AVM) as follows:
                            ``(i) Four representatives of HHT Treatment 
                        Centers of Excellence designated under section 
                        317U(c)(1).
                            ``(ii) Four experts in vascular, molecular, 
                        or basic science.
                            ``(iii) Four representatives of the 
                        National Institutes of Health.
                    ``(B) Chair.--The Secretary shall designate the 
                Chair of the Committee from among its members.
                    ``(C) Interim members.--In place of the 4 members 
                otherwise required to be appointed under subparagraph 
                (A)(i), the Secretary may appoint 4 experts in 
                vascular, molecular, or basic science to serve as 
                members of the Committee during the period preceding 
                designation and establishment of HHT Treatment Centers 
                of Excellence under section 317U.
                    ``(D) Publication of names.--Not later than 30 days 
                after the establishment of the Committee, the Secretary 
                shall publish the names of the Chair and members of the 
                Committee on the public Web site of the Department of 
                Health and Human Services.
                    ``(E) Terms.--The members of the Committee shall 
                each be appointed for a 3-year term and, at the end of 
                each such term, may be reappointed.
                    ``(F) Vacancies.--A vacancy on the Committee shall 
                be filled by the Secretary in the same manner in which 
                the original appointment was made.
            ``(3) Responsibilities.--The Committee shall develop and 
        coordinate implementation of a plan to advance research and 
        understanding of HHT by--
                    ``(A) conducting or supporting basic, 
                translational, and clinical research on HHT across the 
                relevant national research institutes, national 
                centers, and offices of the National Institutes of 
                Health, including the National Heart, Lung, and Blood 
                Institute; the National Institute of Neurological 
                Disorders and Stroke; the National Institutes of 
                Diabetes and Digestive and Kidney Diseases; the Eunice 
                Kennedy Shriver National Institute of Child Health and 
                Human Development; the National Cancer Institute; the 
                National Human Genome Research Institute; the National 
                Center for Advancing Translational Sciences (including 
                the Office of Rare Diseases Research); and the National 
                Institute of Biomedical Imaging and Bioengineering; and
                    ``(B) conducting evaluations and making 
                recommendations to the Secretary, the Director of the 
                National Institutes of Health, and the Director of the 
                National Cancer Institute regarding the prioritization 
                and award of National Institutes of Health research 
                grants relating to HHT, including with respect to 
                grants for--
                            ``(i) expanding understanding of HHT 
                        through basic, translational, and clinical 
                        research on the cause, diagnosis, prevention, 
                        control, and treatment of HHT;
                            ``(ii) training programs on HHT for 
                        scientists and health professionals; and
                            ``(iii) HHT genetic testing research to 
                        improve the accuracy of genetic testing.
    ``(c) Definitions.--In this section:
            ``(1) The term `Committee' means the HHT Coordinating 
        Committee established under subsection (b).
            ``(2) The term `HHT' means hereditary hemorrhagic 
        telangiectasia.''.

SEC. 7. AUTHORIZATION OF APPROPRIATIONS.

    (a) In General.--To carry out section 317U of the Public Health 
Service Act as added by section 4 of this Act, section 5 of this Act, 
and section 409K of the Public Health Service Act as added by section 6 
of this Act, there is authorized to be appropriated $5,000,000 for each 
of fiscal years 2016 through 2020.
    (b) Resource Center.--Of the amount authorized to be appropriated 
under subsection (a) for each of fiscal years 2016 through 2020, 
$1,000,000 shall be for carrying out section 317U(a)(4) of the Public 
Health Service Act (providing for an HHT resource center), as added by 
section 4 of this Act.
    (c) Offset.--There is authorized to be appropriated to the 
Department of Health and Human Services for salaries and expenses of 
the Department for each of fiscal years 2016 through 2020 the amount 
that is $5,000,000 less than the amount appropriated for such salaries 
and expenses for fiscal year 2015.

Summary: Hereditary Hemorrhagic Telangiectasia Diagnosis and Treatment Act of 2015 Amends the Public Health Service Act to require the Department of Health and Human Services (HHS) to establish and implement a hereditary hemorrhagic telangiectasia (HHT, a genetic vascular bleeding disorder that causes abnormalities of the blood vessels) initiative to improve early detection, screening, and treatment of people who suffer from HHT, focusing on advancing HHT research and increasing physician and public awareness of HHT.  Directs HHS to establish the HHT Coordinating Committee to develop and coordinate implementation of a plan to advance research and understanding of HHT, including by conducting or supporting research at the National Institutes of Health (NIH) and making recommendations regarding NIH research grants relating to HHT.  Requires the Centers for Disease Control and Prevention to carry out activities with respect to HHT, including conducting surveillance and establishing an HHT resource center to provide comprehensive education on and disseminate information about HHT to health professionals, patients, industry, and the public.  Requires the Centers for Medicare &amp; Medicaid Services to award grants for HHT research, including an analysis of health care expenditures associated with untreated HHT and costs associated with preventable medical events among Medicare beneficiaries with HHT.