I 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Bleeding Disorder 

5 Screening, Awareness, and Further Education (SAFE) 

6 Act of 2011’’. 

7 SEC. 2. FINDINGS. 

8 The Congress finds as follows: 


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1 (1) Millions of men and women in the United 

2 States may have an inherited bleeding disorder and 

3 not know it. 

4 (2) The most common bleeding disorder, Von 

5 Willebrand Disease (VWD), affects up to one in fifty 

6 Americans, occurring equally amongst men and 

7 women. 

8 (3) Most of those affected by Von Willebrand 

9 Disease remain undiagnosed. 

10 (4) The current combination of laboratory tests, 

11 clinical observations, and family history to diagnose 

12 blood disorders like Von Willebrand Disease is anti13 quated and unreliable. 

14 (5) During adolescence, men and women may 

15 become aware of some of the symptoms of bleeding 

16 disorders. 

17 (6) Many Americans with bleeding disorders 

18 learn to live with the chronic health risks which their 

19 bleeding causes, and do not realize that they may 

20 have a bleeding disorder. 

21 (7) It is believed that many of the 30,000 

22 women who have hysterectomies performed each 

23 year to treat severe bleeding may actually have a 

24 bleeding disorder, and that these women could avoid 


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1 those unnecessary hysterectomies if properly diag2 nosed. 

3 (8) Improved diagnosis of bleeding disorders, 

4 through expanded screening of adolescents, improved 

5 physician awareness, and additional research, could 

6 improve the quality of life for millions of Americans. 

7 SEC. 3. ADOLESCENT SCREENING PROGRAMS. 

8 (a) IN GENERAL.—The Secretary of Health and 

9 Human Services (in this Act referred to as the ‘‘Sec10 retary’’), directly or through the award of grants or con11 tracts to States, political subdivisions of States or Indian 

12 tribes, or other public or nonprofit private entities, shall 

13 carry out the following activities: 

14 (1) Development of a new, or identification of 

15 an existing, screening questionnaire that is evidence16 based and in accordance with clinical guidelines for 

17 use in the diagnosis of bleeding disorders in adoles18 cents and young adults. 

19 (2) As widely as possible in adolescent popu20 lations— 

21 (A) dissemination and implementation of 

22 the screening questionnaire developed or identi23 fied under paragraph (1) and other screening 

24 tools relevant to the diagnosis of bleeding dis25 orders in adolescents; 


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1 (B) if screening suggests the possibility of 

2 a bleeding disorder, ensuring the referral for 

3 further laboratory-based diagnostic testing; and 

4 (C) if laboratory testing confirms diagnosis 

5 of a bleeding disorder, ensuring the referral for 

6 medical management. 

7 (b) PRIORITY.—In awarding any grant or contract 

8 under subsection (a), the Secretary shall give priority to 

9 applicants proposing to provide screening to high school 

10 or institution of higher education students. 

11 (c) TECHNICAL ASSISTANCE.—The Secretary, di12 rectly or through grants or contracts, may provide recipi13 ents of grants or contracts under subsection (a) with tech14 nical assistance regarding the planning, development, and 

15 implementation of activities under such subsection. 

16 (d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

17 out this section, there are authorized to be appropriated 

18 such sums as may be necessary for fiscal years 2012 

19 through 2016. 

20 SEC. 4. INCREASING AWARENESS AMONG HEALTH PROFES21 SIONALS. 

22 (a) IN GENERAL.—The Secretary, directly or through 

23 the award of grants or contracts to States, political sub24 divisions of States or Indian tribes, or other public or non25 profit private entities, shall conduct an education camVerDate Mar 15 2010 17:19 May 25, 2011 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H1919.IH H1919

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1 paign to increase awareness about bleeding disorders 

2 among health professionals. 

3 (b) PRIORITY.—In awarding any grant or contract 

4 under section (a), the Secretary shall give priority to appli5 cants proposing to increase awareness about bleeding dis6 orders among— 

7 (1) health professionals who commonly provide 

8 medical care for the adolescent population, such as 

9 primary care physicians, school nurses, physical fit10 ness education teachers in secondary schools, and 

11 health professionals providing services to students 

12 through an institution of higher education’s health 

13 center; or 

14 (2) obstetricians and gynecologists. 

15 (c) TECHNICAL ASSISTANCE.—The Secretary, di16 rectly or through the award of grants or contracts, may 

17 provide recipients of grants or contracts under subsection 

18 (a) with technical assistance regarding the planning, de19 velopment, and implementation of activities under such 

20 subsection. 

21 (d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

22 out this section, there are authorized to be appropriated 

23 such sums as may be necessary for fiscal years 2012 

24 through 2016. 


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1 SEC. 5. RESEARCH AND SURVEILLANCE. 

2 (a) IN GENERAL.—The Secretary, acting through the 

3 Director of the Centers for Disease Control and Preven4 tion, shall award grants or contracts to public or nonprofit 

5 private entities to— 

6 (1) augment existing research efforts to evalu7 ate, improve, and standardize methods for diag8 nosing bleeding disorders; and 

9 (2) expand ongoing efforts to— 

10 (A) determine the prevalence of bleeding 

11 disorders in the general population, including 

12 prevalence of bleeding disorders among adoles13 cent women; 

14 (B) identify symptoms, risk factors, and 

15 co-morbidities associated with bleeding dis16 orders; and 

17 (C) implement female-specific surveillance 

18 systems and conduct related research projects 

19 to improve bleeding symptoms and quality of 

20 life among adolescent and adult women with 

21 bleeding disorders. 

22 (b) TECHNICAL ASSISTANCE.—The Secretary, di23 rectly or through the award of grants or contracts, may 

24 provide recipients of grants or contracts under subsection 

25 (a) with technical assistance regarding the planning, deVerDate Mar 15 2010 17:19 May 25, 2011 Jkt 099200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H1919.IH H1919

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1 velopment, and implementation of activities under such 

2 subsection. 

3 (c) AUTHORIZATION OF APPROPRIATIONS.—To carry 

4 out this section there are authorized to be appropriated 

5 such sums as may be necessary for fiscal years 2012 

6 through 2016. 

7 SEC. 6. REPORT. 

8 (a) IN GENERAL.—Not later than 5 years after the 

9 date of the enactment of this Act, the Secretary shall sub10 mit to the Congress a report on the results of activities 

11 under this Act. 

12 (b) CONTENTS.—At a minimum, the report under 

13 subsection (a) shall— 

14 (1) catalog, with respect to bleeding disorder 

15 screening, health professional education, and surveil16 lance— 

17 (A) the activities of the Federal Govern18 ment, including an assessment of the progress 

19 achieved under this Act; 

20 (B) the portion of students in United 

21 States high schools and institutions of higher 

22 education who have received some form of 

23 screening for bleeding disorders as a result of 

24 programs under this Act; 


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1 (C) the number of health professionals who 

2 have received some form of bleeding disorder 

3 education as a result of programs under this 

4 Act; and 

5 (D) the prevalence and incidence of bleed6 ing disorders among the general population and 

7 among women; and 

8 (2) make recommendations for the future direc9 tion of bleeding disorder activities, including— 

10 (A) a description of how the Federal Gov11 ernment, as well as recipients of grants and 

12 contracts under this Act, may improve their 

13 screening and education programs to increase 

14 bleeding disorder diagnostic rates, including the 

15 identification of steps that may be taken to re16 duce— 

17 (i) the prevalence of undiagnosed 

18 bleeding disorders; and 

19 (ii) the burden of bleeding disorders 

20 as a chronic condition; 

21 (B) an identification of organizations that 

22 have most effectively and efficiently increased 

23 bleeding disorder screening rates; 

24 (C) an identification of programs and pro25 cedures that have most effectively and effiVerDate Mar 15 2010 17:19 May 25, 2011 Jkt 099200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H1919.IH H1919

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1 ciently increased bleeding disorder screening 

2 rates, and steps that may be taken to expand 

3 such programs and policies to benefit larger 

4 populations; 

5 (D) a description of the services provided 

6 by hemophilia treatment centers, including in7 formation regarding any increase in utilization 

8 of such centers and any subsequent increase in 

9 resources necessary to ensure sufficient treat10 ment for all those utilizing such centers; and 

11 (E) recommendations for future research 

12 and interventions. 

13 SEC. 7. DEFINITION. 

14 In this Act, the term ‘‘State’’ includes the District 

15 of Columbia and any commonwealth, territory, or posses16 sion of the United States. 

Æ 


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