I 
112TH CONGRESS 
1ST SESSION H. R. 1919 
To authorize the Secretary of Health and Human Services to conduct pro-
grams to screen adolescents, and educate health professionals, with re-
spect 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 Representa-
tives 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: 
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(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 anti-
quated 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 
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(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, di-
rectly or through grants or contracts, may provide recipi-
ents of grants or contracts under subsection (a) with tech-
nical 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 PROFES-
SIONALS. 
(a) IN GENERAL.—The Secretary, directly or through 
the award of grants or contracts to States, political sub-
divisions of States or Indian tribes, or other public or non-
profit private entities, shall conduct an education cam-
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paign 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 appli-
cants proposing to increase awareness about bleeding dis-
orders among— 
(1) health professionals who commonly provide 
medical care for the adolescent population, such as 
primary care physicians, school nurses, physical fit-
ness 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, di-
rectly or through the award of grants or contracts, may 
provide recipients of grants or contracts under subsection 
(a) with technical assistance regarding the planning, de-
velopment, 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. 
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SEC. 5. RESEARCH AND SURVEILLANCE. 
(a) IN GENERAL.—The Secretary, acting through the 
Director of the Centers for Disease Control and Preven-
tion, shall award grants or contracts to public or nonprofit 
private entities to— 
(1) augment existing research efforts to evalu-
ate, improve, and standardize methods for diag-
nosing 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 adoles-
cent women; 
(B) identify symptoms, risk factors, and 
co-morbidities associated with bleeding dis-
orders; 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, di-
rectly or through the award of grants or contracts, may 
provide recipients of grants or contracts under subsection 
(a) with technical assistance regarding the planning, de-
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velopment, 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 sub-
mit 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 surveil-
lance— 
(A) the activities of the Federal Govern-
ment, 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; 
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(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 bleed-
ing disorders among the general population and 
among women; and 
(2) make recommendations for the future direc-
tion of bleeding disorder activities, including— 
(A) a description of how the Federal Gov-
ernment, 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 re-
duce— 
(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 pro-
cedures that have most effectively and effi-
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ciently 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 in-
formation regarding any increase in utilization 
of such centers and any subsequent increase in 
resources necessary to ensure sufficient treat-
ment 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 posses-
sion of the United States. 
Æ 
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