II 

113TH CONGRESS 

1ST SESSION S. 1453 

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 SENATE OF THE UNITED STATES 

AUGUST 1, 2013 

Mr. CASEY introduced the following bill; which was read twice and referred 

to the Committee on Health, Education, Labor, and Pensions 

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’’. 

6 SEC. 2. FINDINGS. 

7 The Congress finds as follows: 


tjames on DSK6SPTVN1PROD with BILLS
2 

•S 1453 IS

1 (1) Pulmonary hypertension is a serious, debili2 tating, and often fatal progressive condition where 

3 the blood pressure in the lungs rises to dangerously 

4 high levels. In pulmonary hypertension patients, the 

5 walls of the arteries that take blood from the right 

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

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

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

9 enlarge and ultimately fail. 

10 (2) In advanced stages of pulmonary hyper11 tension, the patient is able to perform only minimal 

12 activity and has symptoms even when resting, result13 ing in considerable disability. The disease may wors14 en to the point where the patient is completely bed15 ridden. In a matter of months, many pulmonary hy16 pertension patients have become so functionally dete17 riorated that they have lost their jobs and are de18 pendent on family and disability benefits. 

19 (3) Despite the importance of early diagnosis 

20 on prognosis, pulmonary hypertension is rarely 

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

22 later stages, the signs of the disease are frequently 

23 confused with more common conditions that affect 

24 the heart and lungs. Due to the fact that the aver25 age length of time between the onset of symptoms 


tjames on DSK6SPTVN1PROD with BILLS
3 

•S 1453 IS

1 and an accurate diagnosis is presently 2.8 years, 

2 nearly three out of four patients have advanced pul3 monary hypertension by the time they are accurately 

4 diagnosed. 

5 (4) While pulmonary hypertension remains an 

6 incurable condition, progress in our scientific under7 standing of the disease has led to the development 

8 and Food and Drug Administration approval of nine 

9 innovative therapies indicated to treat pulmonary 

10 hypertension. 

11 (5) Existing treatment options can significantly 

12 extend life and improve quality of life for patients 

13 with pulmonary hypertension. The effectiveness of 

14 pulmonary hypertension treatment options is directly 

15 tied to how early in the progression of the condition 

16 a patient can be accurately diagnosed and begin the 

17 correct regimen of therapies. Improved early inter18 vention will improve health outcomes for pulmonary 

19 hypertension patients while reducing the necessity 

20 for more drastic and costly treatment options, such 

21 as a lung or heart-lung transplant. 

22 SEC. 3. INTERAGENCY PULMONARY HYPERTENSION CO23 ORDINATING COMMITTEE. 

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

25 Human Services (in this Act referred to as the ‘‘SecVerDate Mar 15 2010 23:36 Aug 08, 2013 Jkt 029200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S1453.IS S1453

tjames on DSK6SPTVN1PROD with BILLS
4 

•S 1453 IS

1 retary’’) shall establish a committee, to be known as the 

2 ‘‘Interagency Pulmonary Hypertension Coordinating Com3 mittee’’ (in this Act referred to as the ‘‘Committee’’), to 

4 make recommendations on, and coordinate, all efforts 

5 within the Department of Health and Human Services 

6 concerning pulmonary hypertension. 

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

8 under this section, the Committee shall— 

9 (1) develop and annually update a summary of 

10 pulmonary hypertension advances in medical re11 search and treatment development and improvement, 

12 early and accurate diagnosis, appropriate and timely 

13 intervention, transplantation, and access to care and 

14 therapies for patients; 

15 (2) monitor Federal activities with respect to 

16 pulmonary hypertension; 

17 (3) make recommendations to the Secretary re18 garding appropriate changes to such activities, in19 cluding recommendations with respect to the stra20 tegic plan developed under paragraph (5); 

21 (4) make recommendations to the Secretary re22 garding stakeholder participation in decisions relat23 ing to pulmonary hypertension; 

24 (5) develop and annually update a comprehen25 sive strategic plan to cooperatively improve health 


tjames on DSK6SPTVN1PROD with BILLS
5 

•S 1453 IS

1 outcomes for pulmonary hypertension patients which 

2 includes— 

3 (A) recommendations to improve profes4 sional education concerning accurate diagnosis 

5 and appropriate intervention for health care 

6 providers; 

7 (B) recommendations to improve the trans8 plantation criteria and process concerning lung 

9 and heart-lung transplants for pulmonary hy10 pertension patients; 

11 (C) recommendations to improve public 

12 awareness and recognition of pulmonary hyper13 tension; 

14 (D) recommendations to improve health 

15 care delivery and promote early and accurate 

16 diagnosis for pulmonary hypertension patients; 

17 and 

18 (E) recommendations to systematically ad19 vance the full spectrum of biomedical research, 

20 including specific recommendations for basic, 

21 translational, clinical, and pediatric research, 

22 and research training and career development; 

23 and 

24 (6) submit to the Congress the strategic plan 

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


tjames on DSK6SPTVN1PROD with BILLS
6 

•S 1453 IS

1 (c) MEMBERSHIP.— 

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

3 composed of— 

4 (A) the Administrator of the Health Re5 sources and Services Administration; 

6 (B) the Director of the Centers for Disease 

7 Control and Prevention and the directors of 

8 such centers at the Centers for Disease Control 

9 and Prevention as the Secretary determines ap10 propriate; 

11 (C) the Director of the National Institutes 

12 of Health and the directors of such institutes, 

13 centers, and offices at the National Institutes of 

14 Health as the Secretary determines appropriate; 

15 (D) the Director of the Agency for 

16 Healthcare Research and Quality; 

17 (E) the Commissioner of Food and Drugs 

18 and the directors of such centers and offices at 

19 the Food and Drug Administration as the Sec20 retary determines appropriate; 

21 (F) the heads of other relevant agencies as 

22 the Secretary deems appropriate; and 

23 (G) the additional members appointed 

24 under paragraph (2). 


tjames on DSK6SPTVN1PROD with BILLS
7 

•S 1453 IS

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

members of the Committee or 1 2 ⁄3 of the total mem3 bership of the Committee, whichever is greater, shall 

4 be composed of non-Federal public members to be 

5 appointed by the Secretary, of which— 

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

7 individual with a diagnosis of pulmonary hyper8 tension; 

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

10 primary caregiver for an individual with a diag11 nosis of pulmonary hypertension; and 

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

13 representative of a leading research, advocacy, 

14 and support organization primarily serving indi15 viduals with a diagnosis of pulmonary hyper16 tension. 

17 (d) ADMINISTRATIVE SUPPORT; TERMS OF SERVICE; 

18 OTHER PROVISIONS.—The following provisions shall apply 

19 with respect to the Committee: 

20 (1) The Committee shall receive necessary and 

21 appropriate administrative support from the Sec22 retary. 

23 (2) Members of the Committee appointed under 

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

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


tjames on DSK6SPTVN1PROD with BILLS
8 

•S 1453 IS

1 year terms. Any member appointed to fill a vacancy 

2 for an unexpired term shall be appointed for the re3 mainder of such term. A member may serve after 

4 the expiration of the member’s term until a suc5 cessor has taken office. 

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

7 chairperson or upon the request of the Secretary. 

8 The Committee shall meet not fewer than two times 

9 each year. 

10 (4) All meetings of the Committee shall be pub11 lic and shall include appropriate time periods for 

12 questions and presentations by the public. 

13 (e) SUBCOMMITTEES; ESTABLISHMENT AND MEM14 BERSHIP.—In carrying out its functions, the Committee 

15 may establish subcommittees and convene workshops and 

16 conferences. Such subcommittees shall be composed of 

17 Committee members and may hold such meetings as are 

18 necessary to enable the subcommittees to carry out their 

19 duties. 

20 SEC. 4. REPORT TO CONGRESS. 

21 (a) IN GENERAL.—Not later than one year after the 

22 date of enactment of this Act, and biennially thereafter, 

23 the Secretary, in coordination with the Committee, shall 

24 prepare and submit to the Committee on Health, Edu25 cation, Labor, and Pensions of the Senate and the ComVerDate Mar 15 2010 23:36 Aug 08, 2013 Jkt 029200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S1453.IS S1453

tjames on DSK6SPTVN1PROD with BILLS
9 

•S 1453 IS

1 mittee on Energy and Commerce Committee of the House 

2 of Representatives a progress report on activities related 

3 to improving health outcomes for pulmonary hypertension 

4 patients. 

5 (b) CONTENTS.—The report submitted under sub6 section (a) shall contain— 

7 (1) information on the incidence of pulmonary 

8 hypertension and trend data of such incidence since 

9 the date of enactment of the Pulmonary Hyper10 tension Research and Diagnosis Act of 2013; 

11 (2) information on the average time between 

12 initial screening and accurate diagnosis as well as 

13 the average stage of pulmonary hypertension when 

14 appropriate intervention begins and up-to-date, re15 lated trend data; 

16 (3) information on the effectiveness and out17 comes of interventions for individuals diagnosed with 

18 pulmonary hypertension, including— 

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

20 of drastic treatment options like lung and 

21 heart-lung transplants; and 

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

23 (4) information on breakthroughs in basic 

24 science as well as translational and clinical research 

25 activities; 


tjames on DSK6SPTVN1PROD with BILLS
10 

•S 1453 IS

1 (5) information on activity to facilitate the de2 velopment of innovative treatment options and diag3 nostic tools; and 

4 (6) information on services and supports pro5 vided to individuals with a diagnosis of pulmonary 

6 hypertension. 

7 SEC. 5. SUNSET. 

8 This Act shall not apply after September 30, 2018, 

9 and the Interagency Pulmonary Hypertension Coordi10 nating Committee shall be terminated on such date. 

Æ 


tjames on DSK6SPTVN1PROD with BILLS