I 

113TH CONGRESS 

1ST SESSION H. R. 2073 

To direct the Secretary of Health and Human Services to establish an 

interagency coordinating committee on pulmonary hypertension to develop 

recommendations to advance research, increase awareness and education, 

and improve health and health care, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

MAY 21, 2013 

Mr. BRADY of Texas (for himself, Mrs. CAPPS, Mr. KING of New York, Ms. 

NORTON, Mr. ROSKAM, Mr. COSTA, and Mr. BISHOP of New York) 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 

establish an interagency coordinating committee on pulmonary hypertension to develop recommendations to advance research, increase awareness and education, and 

improve health and health care, 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 2013’’. 


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1 SEC. 2. FINDINGS. 

2 The Congress finds as follows: 

3 (1) Pulmonary hypertension is a serious, debili4 tating, and often fatal progressive condition where 

5 the blood pressure in the lungs rises to dangerously 

6 high levels. In pulmonary hypertension patients, the 

7 walls of the arteries that take blood from the right 

8 side of the heart to the lungs thicken and constrict. 

9 As a result, the right side of the heart has to pump 

10 harder to move blood into the lungs, causing it to 

11 enlarge and ultimately fail. 

12 (2) In advanced stages of pulmonary hyper13 tension, the patient is able to perform only minimal 

14 activity and has symptoms even when resting, result15 ing in considerable disability. The disease may wors16 en to the point where the patient is completely bed17 ridden. In a matter of months, many pulmonary hy18 pertension patients have become so functionally dete19 riorated that they have lost their jobs and are de20 pendent on family and disability benefits. 

21 (3) Despite the importance of early diagnosis 

22 on prognosis, pulmonary hypertension is rarely 

23 picked up in a routine medical exam. Even in its 

24 later stages, the signs of the disease are frequently 

25 confused with more common conditions that affect 

26 the heart and lungs. Due to the fact that the averVerDate Mar 15 2010 20:11 May 24, 2013 Jkt 029200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H2073.IH H2073

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1 age length of time between the onset of symptoms 

2 and an accurate diagnosis is presently 2.8 years, 

3 nearly three out of four patients have advanced pul4 monary hypertension by the time they are accurately 

5 diagnosed. 

6 (4) While pulmonary hypertension remains an 

7 incurable condition, progress in our scientific under8 standing of the disease has led to the development 

9 and Food and Drug Administration approval of nine 

10 innovative therapies indicated to treat pulmonary 

11 hypertension. 

12 (5) Existing treatment options can significantly 

13 extend life and improve quality of life for patients 

14 with pulmonary hypertension. The effectiveness of 

15 pulmonary hypertension treatment options is directly 

16 tied to how early in the progression of the condition 

17 a patient can be accurately diagnosed and begin the 

18 correct regimen of therapies. Improved early inter19 vention will improve health outcomes for pulmonary 

20 hypertension patients while reducing the necessity 

21 for more drastic and costly treatment options, such 

22 as a lung or heart-lung transplant. 


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1 SEC. 3. INTERAGENCY PULMONARY HYPERTENSION CO2 ORDINATING COMMITTEE. 

3 (a) ESTABLISHMENT.—The Secretary of Health and 

4 Human Services (in this Act referred to as the ‘‘Sec5 retary’’) shall establish a committee, to be known as the 

6 ‘‘Interagency Pulmonary Hypertension Coordinating Com7 mittee’’ (in this Act referred to as the ‘‘Committee’’), to 

8 make recommendations on, and coordinate, all efforts 

9 within the Department of Health and Human Services 

10 concerning pulmonary hypertension. 

11 (b) RESPONSIBILITIES.—In carrying out its duties 

12 under this section, the Committee shall— 

13 (1) develop and annually update a summary of 

14 pulmonary hypertension advances in medical re15 search and treatment development and improvement, 

16 early and accurate diagnosis, appropriate and timely 

17 intervention, transplantation, and access to care and 

18 therapies for patients; 

19 (2) monitor Federal activities with respect to 

20 pulmonary hypertension; 

21 (3) make recommendations to the Secretary re22 garding appropriate changes to such activities, in23 cluding recommendations with respect to the stra24 tegic plan developed under paragraph (5); 


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1 (4) make recommendations to the Secretary re2 garding stakeholder participation in decisions relat3 ing to pulmonary hypertension; 

4 (5) develop and annually update a comprehen5 sive strategic plan to cooperatively improve health 

6 outcomes for pulmonary hypertension patients which 

7 includes— 

8 (A) recommendations to improve profes9 sional education concerning accurate diagnosis 

10 and appropriate intervention for health care 

11 providers; 

12 (B) recommendations to improve the trans13 plantation criteria and process concerning lung 

14 and heart-lung transplants for pulmonary hy15 pertension patients; 

16 (C) recommendations to improve public 

17 awareness and recognition of pulmonary hyper18 tension; 

19 (D) recommendations to improve health 

20 care delivery and promote early and accurate 

21 diagnosis for pulmonary hypertension patients; 

22 and 

23 (E) recommendations to systematically ad24 vance the full spectrum of biomedical research, 

25 including specific recommendations for basic, 


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1 translational, clinical, and pediatric research, 

2 and research training and career development; 

3 and 

4 (6) submit to the Congress the strategic plan 

5 under paragraph (5) and any updates to such plan. 

6 (c) MEMBERSHIP.— 

7 (1) IN GENERAL.—The Committee shall be 

8 composed of— 

9 (A) the Administrator of the Health Re10 sources and Services Administration; 

11 (B) the Director of the Centers for Disease 

12 Control and Prevention and the directors of 

13 such centers at the Centers for Disease Control 

14 and Prevention as the Secretary determines ap15 propriate; 

16 (C) the Director of the National Institutes 

17 of Health and the directors of such institutes, 

18 centers, and offices at the National Institutes of 

19 Health as the Secretary determines appropriate; 

20 (D) the Director of the Agency for 

21 Healthcare Research and Quality; 

22 (E) the Commissioner of Food and Drugs 

23 and the directors of such centers and offices at 

24 the Food and Drug Administration as the Sec25 retary determines appropriate; 


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1 (F) the heads of other relevant agencies as 

2 the Secretary deems appropriate; and 

3 (G) the additional members appointed 

4 under paragraph (2). 

5 (2) ADDITIONAL MEMBERS.—Not fewer than 6 

members of the Committee or 1 6 ⁄3 of the total mem7 bership of the Committee, whichever is greater, shall 

8 be composed of non-Federal public members to be 

9 appointed by the Secretary, of which— 

10 (A) at least one such member shall be an 

11 individual with a diagnosis of pulmonary hyper12 tension; 

13 (B) at least one such member shall be the 

14 primary caregiver for an individual with a diag15 nosis of pulmonary hypertension; and 

16 (C) at least one such member shall be a 

17 representative of a leading research, advocacy, 

18 and support organization primarily serving indi19 viduals with a diagnosis of pulmonary hyper20 tension. 

21 (d) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; 

22 OTHER PROVISIONS.—The following provisions shall apply 

23 with respect to the Committee: 


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1 (1) The Committee shall receive necessary and 

2 appropriate administrative support from the Sec3 retary. 

4 (2) Members of the Committee appointed under 

5 subsection (c)(2) shall serve for a term of 4 years, 

6 and may be appointed for one or more additional 4- 

7 year terms. Any member appointed to fill a vacancy 

8 for an unexpired term shall be appointed for the re9 mainder of such term. A member may serve after 

10 the expiration of the member’s term until a suc11 cessor has taken office. 

12 (3) The Committee shall meet at the call of the 

13 chairperson or upon the request of the Secretary. 

14 The Committee shall meet not fewer than two times 

15 each year. 

16 (4) All meetings of the Committee shall be pub17 lic and shall include appropriate time periods for 

18 questions and presentations by the public. 

19 (e) SUBCOMMITTEES; ESTABLISHMENT AND MEM20 BERSHIP.—In carrying out its functions, the Committee 

21 may establish subcommittees and convene workshops and 

22 conferences. Such subcommittees shall be composed of 

23 Committee members and may hold such meetings as are 

24 necessary to enable the subcommittees to carry out their 

25 duties. 


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1 (f) SUNSET.—This section shall not apply after Sep2 tember 30, 2019, and the Committee shall be terminated 

3 on such date. 

4 SEC. 4. REPORT TO CONGRESS. 

5 (a) IN GENERAL.—On a biennial basis after the date 

6 of enactment of this Act, the Secretary, in coordination 

7 with the Committee, shall prepare and submit to the Com8 mittee on Health, Education, Labor, and Pensions of the 

9 Senate and the Committee on Energy and Commerce 

10 Committee of the House of Representatives a progress re11 port on activities related to improving health outcomes for 

12 pulmonary hypertension patients. 

13 (b) CONTENTS.—The report submitted under sub14 section (a) shall contain— 

15 (1) information on the incidence of pulmonary 

16 hypertension and trend data of such incidence since 

17 the date of enactment of the Pulmonary Hyper18 tension Research and Diagnosis Act of 2013; 

19 (2) information on the average time between 

20 initial screening and accurate diagnosis as well as 

21 the average stage of pulmonary hypertension when 

22 appropriate intervention begins and up-to-date, re23 lated trend data; 


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1 (3) information on the effectiveness and out2 comes of interventions for individuals diagnosed with 

3 pulmonary hypertension, including— 

4 (A) mortality rate, as well as the frequency 

5 of drastic treatment options like lung and 

6 heart-lung transplants; and 

7 (B) up-to-date, related trend data; 

8 (4) information on breakthroughs in basic 

9 science as well as translational and clinical research 

10 activities; 

11 (5) information on activity to facilitate the de12 velopment of innovative treatment options and diag13 nostic tools; and 

14 (6) information on services and supports pro15 vided to individuals with a diagnosis of pulmonary 

16 hypertension. 

Æ 


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