I 

118TH CONGRESS 

2D SESSION H. R. 10484 

To direct the Secretary of Health and Human Services to carry out a 

public awareness campaign to increase participation by women in clinical 

trials that are conducted or supported by the National Institutes of 

Health, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

DECEMBER 18, 2024 

Mr. GOTTHEIMER (for himself and Ms. PETTERSEN) introduced the following 

bill; which was referred to the Committee on Energy and Commerce 

A BILL 

To direct the Secretary of Health and Human Services to 

carry out a public awareness campaign to increase participation by women in clinical trials that are conducted 

or supported by the National Institutes of Health, and 

for other purposes. 

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 ‘‘Securing Equal Access 

5 to Research, Care, and Health Act of 2024’’ or the 

6 ‘‘SEARCH Act of 2024’’. 


ssavage on LAPJG3WLY3PROD with BILLS
2 

•HR 10484 IH

1 SEC. 2. PUBLIC AWARENESS CAMPAIGN TO INCREASE PAR2 TICIPATION OF WOMEN IN NIH CLINICAL 

3 TRIALS. 

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

5 Human Services (in this Act referred to as the ‘‘Sec6 retary’’), acting through the Director of the National In7 stitutes of Health, shall carry out a public awareness cam8 paign to increase the participation of women in clinical 

9 trials conducted or supported by the National Institutes 

10 of Health. 

11 (b) TARGETED OUTREACH.—In carrying out the 

12 campaign under subsection (a), the Secretary shall in13 crease outreach at hospitals, physicians’ offices, health 

14 centers, health care clinics, and other locations that the 

15 Secretary determines appropriate. 

16 (c) PRIORITY.—In carrying out the campaign under 

17 subsection (a), the Secretary shall prioritize increasing the 

18 participation of women in clinical trials involving research 

19 on, and development of, products to prevent, diagnose, or 

20 treat, rare diseases and conditions. 

21 (d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

22 out this section, there is authorized to be appropriated 

23 $10,000,000 for each of fiscal years 2025 through 2029. 


ssavage on LAPJG3WLY3PROD with BILLS
3 

•HR 10484 IH

1 SEC. 3. PUBLIC AWARENESS CAMPAIGN TO INCREASE 

2 AWARENESS OF BLEEDING AND CLOTTING 

3 DISORDERS IN WOMEN. 

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

5 Human Services shall carry out a public awareness cam6 paign to increase the number of women participating in 

7 programs of the Department of Health and Human Serv8 ices for research, surveillance, and prevention with respect 

9 to bleeding and clotting disorders, including hemophilia. 

10 (b) AUTHORIZATION OF APPROPRIATIONS.—To carry 

11 out this section, there is authorized to be appropriated 

12 $10,000,000 for each of fiscal years 2025 through 2029. 

13 SEC. 4. INTERAGENCY TASK FORCE ON ADVANCING TREAT14 MENTS FOR RARE DISEASES. 

15 Part A of title III of the Public Health Service Act 

16 (42 U.S.C. 241 et seq.) is amended by adding at the end 

17 the following: 

18 ‘‘SEC. 310C. INTERAGENCY TASK FORCE ON ADVANCING 

19 TREATMENTS FOR RARE DISEASES. 

20 ‘‘(a) IN GENERAL.—The Secretary shall maintain a 

21 permanent task force, to be known as the Interagency 

22 Task Force on Advancing Treatments for Rare Diseases 

23 (in this section referred to as the ‘Task Force’). The Sec24 retary shall establish the Task Force not later than 90 

25 days after the date of enactment of the SEARCH Act of 

26 2024. 


ssavage on LAPJG3WLY3PROD with BILLS
4 

•HR 10484 IH

1 ‘‘(b) COMPOSITION.—The Task Force shall be com2 posed of the following members: 

3 ‘‘(1) The Secretary. 

4 ‘‘(2) The Administrator of the Centers for 

5 Medicare & Medicaid Services. 

6 ‘‘(3) The Commissioner of Food and Drugs. 

7 ‘‘(4) The Director of the National Institutes of 

8 Health. 

9 ‘‘(5) The Director of the Centers for Disease 

10 Control and Prevention. 

11 ‘‘(6) Four individuals, to be appointed by the 

12 Secretary, who are— 

13 ‘‘(A) biopharmaceutical innovators with re14 spect to rare diseases and conditions; 

15 ‘‘(B) private health plan administrators; or 

16 ‘‘(C) representatives of institutions or or17 ganizations conducting federally funded re18 search with respect to rare diseases and condi19 tions. 

20 ‘‘(7) Four individuals, to be appointed by the 

21 Secretary, who are representatives of rare disease 

22 advocacy groups. 

23 ‘‘(c) DUTIES.—The Task Force shall— 

24 ‘‘(1) assess— 


ssavage on LAPJG3WLY3PROD with BILLS
5 

•HR 10484 IH

1 ‘‘(A) Federal agency activities concerning 

2 rare diseases, including projects involving two 

3 or more agencies; 

4 ‘‘(B) overall programmatic funding; and 

5 ‘‘(C) potential measurable outcomes to in6 clude in future reports; and 

7 ‘‘(2) coordinate the efforts of the Department 

8 of Health and Human Services to incentivize re9 search on, and development of, products for preven10 tion, diagnosis, and treatment with respect to rare 

11 diseases and conditions, particularly rare diseases 

12 and conditions that disproportionately impact 

13 women.’’. 

14 SEC. 5. ACTION PLAN FOR COORDINATING HHS EFFORTS 

15 WITH RESPECT TO CERTAIN RARE DISEASES 

16 AND CONDITIONS. 

17 (a) IN GENERAL.—The Secretary shall prepare an 

18 action plan for coordinating efforts of the Department of 

19 Health and Human Services to incentivize research on, 

20 and development of, products for prevention, diagnosis, 

21 and treatment with respect to rare diseases and conditions 

22 that disproportionately impact women. 

23 (b) SUBMISSION AND PUBLIC AVAILABILITY.—Not 

24 later than 180 days after the date of enactment of this 

25 Act, the Secretary shall— 


ssavage on LAPJG3WLY3PROD with BILLS
6 

•HR 10484 IH

1 (1) complete the action plan required by sub2 section (a); 

3 (2) submit such action plan to the Congress; 

4 and 

5 (3) make such plan publicly available, including 

6 by posting on the websites of the Department of 

7 Health and Human Services and the National Insti8 tutes of Health. 

Æ 


ssavage on LAPJG3WLY3PROD with BILLS