1.This Act may be cited as the
Bleeding Disorder Screening,
Awareness, and Further Education (SAFE) Act of
2011
.
2.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.
3.Adolescent
Screening Programs
(a)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)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)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
AppropriationsTo carry out
this section, there are authorized to be appropriated such sums as may be
necessary for fiscal years 2012 through 2016.
4.Increasing
awareness among health professionals
(a)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)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)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
AppropriationsTo carry out this section, there are authorized to
be appropriated such sums as may be necessary for fiscal years 2012 through
2016.
5.Research and
surveillance
(a)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)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
appropriationsTo carry out this section there are authorized to
be appropriated such sums as may be necessary for fiscal years 2012 through
2016.
6.
(a)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)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.
7.In this Act, the term State
includes the District of Columbia and any commonwealth, territory, or
possession of the United States.