[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1919 Introduced in House (IH)]

112th CONGRESS
  1st Session
                                H. R. 1919

  To authorize the Secretary of Health and Human Services to conduct 
programs to screen adolescents, and educate health professionals, with 
                     respect to bleeding disorders.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                              May 13, 2011

Mrs. McCarthy of New York (for herself, Ms. Richardson, Ms. Norton, Ms. 
 Bordallo, and Mr. Grijalva) introduced the following bill; which was 
            referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
  To authorize the Secretary of Health and Human Services to conduct 
programs to screen adolescents, and educate health professionals, with 
                     respect to bleeding disorders.

    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 ``Bleeding Disorder Screening, 
Awareness, and Further Education (SAFE) Act of 2011''.

SEC. 2. FINDINGS.

    The Congress finds as follows:
            (1) Millions of men and women in the United States may have 
        an inherited bleeding disorder and not know it.
            (2) The most common bleeding disorder, Von Willebrand 
        Disease (VWD), affects up to one in fifty Americans, occurring 
        equally amongst men and women.
            (3) Most of those affected by Von Willebrand Disease remain 
        undiagnosed.
            (4) The current combination of laboratory tests, clinical 
        observations, and family history to diagnose blood disorders 
        like Von Willebrand Disease is antiquated and unreliable.
            (5) During adolescence, men and women may become aware of 
        some of the symptoms of bleeding disorders.
            (6) Many Americans with bleeding disorders learn to live 
        with the chronic health risks which their bleeding causes, and 
        do not realize that they may have a bleeding disorder.
            (7) It is believed that many of the 30,000 women who have 
        hysterectomies performed each year to treat severe bleeding may 
        actually have a bleeding disorder, and that these women could 
        avoid those unnecessary hysterectomies if properly diagnosed.
            (8) Improved diagnosis of bleeding disorders, through 
        expanded screening of adolescents, improved physician 
        awareness, and additional research, could improve the quality 
        of life for millions of Americans.

SEC. 3. ADOLESCENT SCREENING PROGRAMS.

    (a) In General.--The Secretary of Health and Human Services (in 
this Act referred to as the ``Secretary''), directly or through the 
award of grants or contracts to States, political subdivisions of 
States or Indian tribes, or other public or nonprofit private entities, 
shall carry out the following activities:
            (1) Development of a new, or identification of an existing, 
        screening questionnaire that is evidence-based and in 
        accordance with clinical guidelines for use in the diagnosis of 
        bleeding disorders in adolescents and young adults.
            (2) As widely as possible in adolescent populations--
                    (A) dissemination and implementation of the 
                screening questionnaire developed or identified under 
                paragraph (1) and other screening tools relevant to the 
                diagnosis of bleeding disorders in adolescents;
                    (B) if screening suggests the possibility of a 
                bleeding disorder, ensuring the referral for further 
                laboratory-based diagnostic testing; and
                    (C) if laboratory testing confirms diagnosis of a 
                bleeding disorder, ensuring the referral for medical 
                management.
    (b) Priority.--In awarding any grant or contract under subsection 
(a), the Secretary shall give priority to applicants proposing to 
provide screening to high school or institution of higher education 
students.
    (c) Technical Assistance.--The Secretary, directly or through 
grants or contracts, may provide recipients of grants or contracts 
under subsection (a) with technical assistance regarding the planning, 
development, and implementation of activities under such subsection.
    (d) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated such sums as may be necessary 
for fiscal years 2012 through 2016.

SEC. 4. INCREASING AWARENESS AMONG HEALTH PROFESSIONALS.

    (a) In General.--The Secretary, directly or through the award of 
grants or contracts to States, political subdivisions of States or 
Indian tribes, or other public or nonprofit private entities, shall 
conduct an education campaign to increase awareness about bleeding 
disorders among health professionals.
    (b) Priority.--In awarding any grant or contract under section (a), 
the Secretary shall give priority to applicants proposing to increase 
awareness about bleeding disorders among--
            (1) health professionals who commonly provide medical care 
        for the adolescent population, such as primary care physicians, 
        school nurses, physical fitness education teachers in secondary 
        schools, and health professionals providing services to 
        students through an institution of higher education's health 
        center; or
            (2) obstetricians and gynecologists.
    (c) Technical Assistance.--The Secretary, directly or through the 
award of grants or contracts, may provide recipients of grants or 
contracts under subsection (a) with technical assistance regarding the 
planning, development, and implementation of activities under such 
subsection.
    (d) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated such sums as may be necessary 
for fiscal years 2012 through 2016.

SEC. 5. RESEARCH AND SURVEILLANCE.

    (a) In General.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, shall award grants or 
contracts to public or nonprofit private entities to--
            (1) augment existing research efforts to evaluate, improve, 
        and standardize methods for diagnosing bleeding disorders; and
            (2) expand ongoing efforts to--
                    (A) determine the prevalence of bleeding disorders 
                in the general population, including prevalence of 
                bleeding disorders among adolescent women;
                    (B) identify symptoms, risk factors, and co-
                morbidities associated with bleeding disorders; and
                    (C) implement female-specific surveillance systems 
                and conduct related research projects to improve 
                bleeding symptoms and quality of life among adolescent 
                and adult women with bleeding disorders.
    (b) Technical Assistance.--The Secretary, directly or through the 
award of grants or contracts, may provide recipients of grants or 
contracts under subsection (a) with technical assistance regarding the 
planning, development, and implementation of activities under such 
subsection.
    (c) Authorization of Appropriations.--To carry out this section 
there are authorized to be appropriated such sums as may be necessary 
for fiscal years 2012 through 2016.

SEC. 6. REPORT.

    (a) In General.--Not later than 5 years after the date of the 
enactment of this Act, the Secretary shall submit to the Congress a 
report on the results of activities under this Act.
    (b) Contents.--At a minimum, the report under subsection (a) 
shall--
            (1) catalog, with respect to bleeding disorder screening, 
        health professional education, and surveillance--
                    (A) the activities of the Federal Government, 
                including an assessment of the progress achieved under 
                this Act;
                    (B) the portion of students in United States high 
                schools and institutions of higher education who have 
                received some form of screening for bleeding disorders 
                as a result of programs under this Act;
                    (C) the number of health professionals who have 
                received some form of bleeding disorder education as a 
                result of programs under this Act; and
                    (D) the prevalence and incidence of bleeding 
                disorders among the general population and among women; 
                and
            (2) make recommendations for the future direction of 
        bleeding disorder activities, including--
                    (A) a description of how the Federal Government, as 
                well as recipients of grants and contracts under this 
                Act, may improve their screening and education programs 
                to increase bleeding disorder diagnostic rates, 
                including the identification of steps that may be taken 
                to reduce--
                            (i) the prevalence of undiagnosed bleeding 
                        disorders; and
                            (ii) the burden of bleeding disorders as a 
                        chronic condition;
                    (B) an identification of organizations that have 
                most effectively and efficiently increased bleeding 
                disorder screening rates;
                    (C) an identification of programs and procedures 
                that have most effectively and efficiently increased 
                bleeding disorder screening rates, and steps that may 
                be taken to expand such programs and policies to 
                benefit larger populations;
                    (D) a description of the services provided by 
                hemophilia treatment centers, including information 
                regarding any increase in utilization of such centers 
                and any subsequent increase in resources necessary to 
                ensure sufficient treatment for all those utilizing 
                such centers; and
                    (E) recommendations for future research and 
                interventions.

SEC. 7. DEFINITION.

    In this Act, the term ``State'' includes the District of Columbia 
and any commonwealth, territory, or possession of the United States.
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