HR 1919
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.
END
