II 

114TH CONGRESS 

2D SESSION S. 3361 

To amend the Public Health Service Act to establish an interagency 

coordinating committee on pulmonary hypertension, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 20, 2016 

Mr. CASEY (for himself and Mr. KING) introduced the following bill; which 

was read twice and referred to the Committee on Health, Education, 

Labor, and Pensions 

A BILL 

To amend the Public Health Service Act to establish an 

interagency coordinating committee on pulmonary hypertension, 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 ‘‘Pulmonary Hyper5 tension Research and Diagnosis Act of 2016’’. 


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1 SEC. 2. INTERAGENCY PULMONARY HYPERTENSION CO2 ORDINATING COMMITTEE ESTABLISHED. 

3 Part P of title III of the Public Health Service Act 

4 (42 U.S.C. 280g et seq.) is amended by adding at the end 

5 the following new section: 

6 ‘‘SEC. 399V–7. INTERAGENCY PULMONARY HYPERTENSION 

7 COORDINATING COMMITTEE. 

8 ‘‘(a) COMMITTEE ESTABLISHED.—The Secretary 

9 shall establish a committee, to be known as the Inter10 agency Pulmonary Hypertension Coordinating Committee 

11 (in this section referred to as the ‘Committee’), to coordi12 nate all efforts within the Department of Health and 

13 Human Services concerning pulmonary hypertension. 

14 ‘‘(b) RESPONSIBILITIES.—The Committee shall— 

15 ‘‘(1) develop and annually update a summary of 

16 the advances made in research on, and treatment 

17 and diagnosis of, pulmonary hypertension; 

18 ‘‘(2) develop and annually update a summary of 

19 the advances made in access to care for individuals 

20 with a diagnosis of pulmonary hypertension; 

21 ‘‘(3) monitor pulmonary hypertension research, 

22 services, and support activities across the Federal 

23 Government, including coordination of Federal ac24 tivities and programs with respect to pulmonary hy25 pertension; 


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1 ‘‘(4) develop and annually update a comprehen2 sive strategic plan under subsection (c) to improve 

3 health outcomes for individuals with a diagnosis of 

4 pulmonary hypertension; and 

5 ‘‘(5) develop and annually update the progress 

6 made in implementing such comprehensive strategic 

7 plan. 

8 ‘‘(c) STRATEGY.—Not later than one year after the 

9 date of the enactment of the Pulmonary Hypertension Re10 search and Diagnosis Act of 2016 and annually thereafter, 

11 the Committee shall submit to Congress and the Secretary 

12 a strategy to improve health outcomes for individuals with 

13 a diagnosis of pulmonary hypertension. Such strategy 

14 shall include the following: 

15 ‘‘(1) Recommendations to advance research on 

16 pulmonary hypertension. 

17 ‘‘(2) Recommendations to improve the trans18 plantation criteria and process concerning lung and 

19 heart-lung transplants for individuals with a diag20 nosis of pulmonary hypertension. 

21 ‘‘(3) Recommendations to improve public 

22 awareness and recognition of pulmonary hyper23 tension. 


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1 ‘‘(4) Recommendations to improve health care 

2 delivery for individuals with a diagnosis of pul3 monary hypertension. 

4 ‘‘(5) Recommendations to improve the early and 

5 accurate diagnosis of pulmonary hypertension. 

6 ‘‘(6) Recommendations to systematically ad7 vance the full spectrum of biomedical research on 

8 pulmonary hypertension. 

9 ‘‘(d) MEMBERSHIP.— 

10 ‘‘(1) IN GENERAL.—The Committee shall be 

11 composed of— 

12 ‘‘(A) the Director of the Agency for 

13 Healthcare Research and Quality; 

14 ‘‘(B) the Assistant Secretary of the Admin15 istration for Children and Families; 

16 ‘‘(C) the Director of the Centers for Dis17 ease Control and Prevention; 

18 ‘‘(D) the Administrator of the Centers for 

19 Medicare & Medicaid Services; 

20 ‘‘(E) the Secretary of Defense; 

21 ‘‘(F) the Commissioner of Food and 

22 Drugs; 

23 ‘‘(G) the Administrator of the Health Re24 sources and Services Administration; 


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1 ‘‘(H) the Director of the National Insti2 tutes of Health; and 

3 ‘‘(I) the non-Federal members appointed 

4 under paragraph (2). 

5 ‘‘(2) NON-FEDERAL MEMBERS.—Not fewer 

6 than 6 members of the Committee or one-third of 

7 the total membership of the Committee, whichever is 

8 greater, shall be composed of non-Federal members 

9 to be appointed by the Secretary, of which— 

10 ‘‘(A) at least 2 shall be individuals with a 

11 diagnosis of pulmonary hypertension; 

12 ‘‘(B) at least 1 shall be the parent or 

13 guardian of an individual with a diagnosis of 

14 pulmonary hypertension; 

15 ‘‘(C) at least 1 shall be a representative of 

16 a pharmaceutical company that manufactures a 

17 drug or device for detecting, preventing, or 

18 treating pulmonary hypertension; and 

19 ‘‘(D) at least 1 shall be a representative of 

20 a leading research, advocacy, or support organi21 zation primarily serving individuals with a diag22 nosis of pulmonary hypertension. 

23 ‘‘(e) MEETINGS.—The Committee shall meet not 

24 fewer than 2 times each year. All meetings shall be open 

25 to the public. 


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1 ‘‘(f) TERMINATION DATE.—The Committee shall ter2 minate on the date that is 5 years after the date of the 

3 enactment of the Pulmonary Hypertension Research and 

4 Diagnosis Act of 2016.’’. 

5 SEC. 3. REPORT TO CONGRESS. 

6 (a) REPORT REQUIRED.—Not later than 2 years 

7 after the date of the enactment of this Act, the Secretary 

8 of Health and Human Services, in coordination with the 

9 Interagency Pulmonary Hypertension Coordinating Com10 mittee, shall prepare and submit to the Committee on 

11 Health, Education, Labor, and Pensions of the Senate and 

12 the Committee on Energy and Commerce of the House 

13 of Representatives a progress report on activities related 

14 to improving health outcomes for individuals with a diag15 nosis of pulmonary hypertension. 

16 (b) CONTENTS OF REPORT.—The report submitted 

17 under subsection (a) shall contain— 

18 (1) information on the incidence of pulmonary 

19 hypertension including such incidence since the date 

20 of the enactment of this Act; 

21 (2) information on the prevalence of pulmonary 

22 hypertension in children and adults; 

23 (3) information on the average time between 

24 the initial screening and the accurate diagnosis of 

25 pulmonary hypertension; 


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1 (4) information on the average stage of pul2 monary hypertension when appropriate intervention 

3 begins; 

4 (5) information on the effectiveness and out5 comes of interventions for individuals with a diag6 nosis of pulmonary hypertension, including— 

7 (A) mortality rate; and 

8 (B) the frequency of drastic treatment op9 tions such as lung and heart-lung transplants; 

10 (6) information on new developments in re11 search activities; 

12 (7) information on innovative treatment options 

13 and diagnostic tools; and 

14 (8) information on services and supports avail15 able to individuals with a diagnosis of pulmonary hy16 pertension. 

17 (c) PUBLICATION.—The Secretary of Health and 

18 Human Services shall make the report submitted under 

19 subsection (a) available on the public Internet Web site 

20 of the Department of Health and Human Services. 

Æ 


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