[Congressional Record (Bound Edition), Volume 154 (2008), Part 16]
[House]
[Pages 21824-21826]
[From the U.S. Government Publishing Office, www.gpo.gov]




  TOM LANTOS PULMONARY HYPERTENSION RESEARCH AND EDUCATION ACT OF 2008

  Mr. PALLONE. Madam Speaker, I move to suspend the rules and pass the 
bill (H.R. 6568) to direct the Secretary of Health and Human Services 
to encourage research and carry out an educational campaign with 
respect to pulmonary hypertension, and for other purposes, as amended.
  The Clerk read the title of the bill.
  The text of the bill is as follows:

                               H.R. 6568

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

     SECTION 1. SHORT TITLE.

        This Act may be cited as the ``Tom Lantos Pulmonary 
     Hypertension Research and Education Act of 2008''.

     SEC. 2. TABLE OF CONTENTS.

       The table of contents for this Act is as follows:

Sec. 1. Short title.
Sec. 2. Table of contents.

              TITLE I--RESEARCH ON PULMONARY HYPERTENSION

Sec. 101. Expansion and intensification of activities.

        TITLE II--INCREASING AWARENESS OF PULMONARY HYPERTENSION

Sec. 201. Promoting public awareness.
Sec. 202. Promoting awareness among health care professionals.

              TITLE I--RESEARCH ON PULMONARY HYPERTENSION

     SEC. 101. EXPANSION AND INTENSIFICATION OF ACTIVITIES.

       (a) Sense of Congress.--It is the sense of the Congress 
     that--
       (1) the Secretary of Health and Human Services (in this Act 
     referred to as the ``Secretary''), acting through the 
     Director of the National Institutes of Health and the 
     Director of the National Heart, Lung, and Blood Institute (in 
     this title referred to as the ``Institute''), should continue 
     aggressive work on pulmonary hypertension;
       (2) as part of such work, the Director of the Institute 
     should continue research to expand the understanding of the 
     causes of, and to find a cure for, pulmonary hypertension; 
     and
       (3) activities under paragraph (1) may include conducting 
     and supporting--
       (A) basic research concerning the etiology and causes of 
     pulmonary hypertension;
       (B) basic research on the relationship between scleroderma, 
     sickle cell anemia (and other conditions identified by the 
     Director of the Institute that can lead to a secondary 
     diagnosis of pulmonary hypertension), and pulmonary 
     hypertension;
       (C) clinical research for the development and evaluation of 
     new treatments for pulmonary hypertension, including the 
     establishment of a ``Pulmonary Hypertension Clinical Research 
     Network'';
       (D) support for the training of new clinicians and 
     investigators with expertise in the pulmonary hypertension; 
     and
       (E) information and education programs for the general 
     public.
       (b) Biennial Reports.--As part of the biennial report made 
     under section 403 of the Public Health Service Act (42 U.S.C. 
     283), the Secretary shall include information on the status 
     of pulmonary hypertension research at the National Institutes 
     of Health.

        TITLE II--INCREASING AWARENESS OF PULMONARY HYPERTENSION

     SEC. 201. PROMOTING PUBLIC AWARENESS.

       (a) In General.--The Secretary, acting through the Director 
     of the Centers for Disease Control and Prevention, shall 
     carry out an educational campaign to increase public 
     awareness of pulmonary hypertension. Print, video, and Web-
     based materials distributed under this program may include--
       (1) basic information on pulmonary hypertension and its 
     symptoms; and
       (2) information on--
       (A) the incidence and prevalence of pulmonary hypertension;
       (B) diseases and conditions that can lead to pulmonary 
     hypertension as a secondary diagnosis;
       (C) the importance of early diagnosis; and
       (D) the availability, as medically appropriate, of a range 
     of treatment options and pulmonary hypertension.
       (b) Dissemination of Information.--The Secretary is 
     encouraged to disseminate information under subsection (a) 
     through a cooperative agreement with a national nonprofit 
     entity with expertise in pulmonary hypertension.
       (c) Report to Congress.--Not later than September 30, 2009, 
     the Secretary shall report to the Committee on Energy and 
     Commerce of the House of Representatives, the Committee on 
     Health, Education, Labor, and Pensions of the Senate, and the 
     Committee on Appropriations of the House of Representatives 
     and the Senate on the status of activities under this 
     section.
       (d) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there is authorized to be 
     appropriated $2,500,000 for each of fiscal years 2009, 2010, 
     and 2011.

     SEC. 202. PROMOTING AWARENESS AMONG HEALTH CARE 
                   PROFESSIONALS.

       (a) In General.--The Secretary, acting through the 
     Administrator of the Health Resources and Services 
     Administration and the Director of the Centers for Disease 
     Control and Prevention, shall carry out an educational 
     campaign to increase awareness of pulmonary hypertension 
     among health care providers. Print, video, and Web-based 
     materials distributed under this program may include 
     information on--
       (1) the symptoms of pulmonary hypertension;
       (2) the importance of early diagnosis;
       (3) current diagnostic criteria; and
       (4) Food and Drug Administration-approved therapies for the 
     disease.
       (b) Targeted Health Care Providers.--Health care providers 
     targeted through the campaign under subsection (a) shall 
     include, but not be limited to, cardiologists, 
     pulmonologists, rheumatologists, primary care physicians, 
     pediatricians, and nurse practitioners.
       (c) Dissemination of Information.--The Secretary is 
     encouraged to disseminate information under subsection (a) 
     through a cooperative agreement with a national nonprofit 
     entity with expertise in pulmonary hypertension.
       (d) Report to Congress.--Not later than September 30, 2009, 
     the Secretary shall report to the Committee on Energy and 
     Commerce of the House of Representatives, the Committee on 
     Health, Education, Labor, and Pensions of the Senate, and the 
     Committee on Appropriations of the House of Representatives 
     and the Senate on the status of activities under this 
     section.
       (e) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there is authorized to be 
     appropriated $2,500,000 for each of fiscal years 2009, 2010, 
     and 2011.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New 
Jersey (Mr. Pallone) and the gentleman from Georgia (Mr. Deal) each 
will control 20 minutes.
  The Chair recognizes the gentleman from New Jersey.


                             General Leave

  Mr. PALLONE. Madam Speaker, I ask unanimous consent that all Members 
have 5 legislative days to revise and extend their remarks and to 
include extraneous material on the bill under consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from New Jersey?
  There was no objection.
  Mr. PALLONE. Madam Speaker, I yield myself such time as I may 
consume.
  Madam Speaker, I rise in strong support of H.R. 6568, the Tom Lantos 
Pulmonary Hypertension Research and Education Act of 2008, as 
introduced by representative Kevin Brady and my good friend and the 
Health Subcommittee's vice chair, Lois Capps.
  Pulmonary hypertension is a rare lung disorder in which the blood 
pressure in the pulmonary artery rises far above normal levels, usually 
with no apparent reason. Symptoms include chronic fatigue, shortness of 
breath, chest pains, palpitations, and fainting. According to the 
Centers for Disease Control and Prevention, in 2002 there were 15,668 
deaths and 260,000 hospital visits among persons with pulmonary 
hypertension.
  The number of hospitalizations related to pulmonary hypertension has 
been increasing in recent years, especially among women. This measure 
would help improve current research efforts on pulmonary hypertension, 
as well as increased public awareness.
  I want to thank my colleagues, Mr. Brady and Mrs. Capps for their 
work on this legislation.
  I also want to recognize my colleague, Mr. Lantos, who passed away 
earlier this year. Passage of today's bill is a fitting tribute to 
Representative Lantos and his work in raising awareness about pulmonary 
hypertension and thousands of patients who suffer from it.
  I urge my colleagues on both sides of the aisle to offer their 
support for this very important bill, and I reserve the balance of my 
time.
  Mr. DEAL of Georgia. Madam Speaker, I too rise in support of this 
legislation and want to commend the work of Mrs. Capps and also Mr. 
Kevin Brady.
  I would, at this time, yield to Mr. Brady as much time as he might 
consume in support of this legislation, of which he was one of the 
original sponsors.
  Mr. BRADY of Texas. Let me first thank Mr. Deal for his remarkable

[[Page 21825]]

leadership in shepherding this bill to the floor. Without him 
championing it through the Energy and Commerce Committee along with 
Mrs. Capps, this simply would not be happening. I want to thank Mr. 
Deal for his leadership on behalf of many, many, many patients.
  I would also like to take a brief moment to reflect on the loss of my 
friend and one of pulmonary hypertension's most important voices in 
Congress, Tom Lantos. I know I speak for each one of us here when I say 
that we have dearly missed Tom's passion for his work and for the House 
of Representatives.
  As chairman of the House Foreign Relations Committee, Tom was 
regularly confronting some of the most pressing challenges facing our 
country in the world today. Nevertheless, it was his work on PH that he 
routinely cited the most important thing he was doing in Congress.
  As many of us know, Tom's granddaughter, Charity, was diagnosed with 
pulmonary hypertension several years ago. Ever since he had been a 
tireless advocates on behalf of PH patients and, in my opinion, a large 
part of why we have made so much progress over the last decade.
  Like Tom, my involvement with PH is very personal. It is now more 
than a decade since the daughter of my very good friend, Jack Stibbs, 
was diagnosed with PH. Jack's daughter, Emily, was only 5 when her 
parents noticed at a community parade that she was struggling to 
bicycle fast enough to keep up with her friends. She always seemed out 
of breath and struggled to climb stairs. Doctors eventually diagnosed 
her with pulmonary hypertension.
  PH is a serious and often-fatal condition where the blood pressure in 
the lungs rises to dangerously high levels. In PH patients, the walls 
of the arteries that take blood from the right side of the heart to the 
lungs, thicken and constrict. As a result, the right side of the heart 
has to pump harder and harder to move blood into the lungs, causing it 
to enlarge and ultimately fail.
  PH can occur without a known cause or be secondary to other 
conditions, such as scleroderma, lupus, HIV, sickle cell, and liver 
disease. Patients develop symptoms that include shortness of breath, 
fatigue, chest pain, dizziness and fainting.
  Unfortunately, these symptoms are frequently misdiagnosed, leaving 
patients with the false impression that they have a minor pulmonary or 
cardiovascular condition. By the time many patients receive an accurate 
diagnosis, the disease has progressed to a late stage, making it 
impossible to receive a necessary heart or lung transplant.
  When Emily Stibbs was first diagnosed in 1977, the average survival 
rate for PH patients was just 2\1/2\ years. There was only one FDA-
approved therapy at the time, and the best that doctors could do was to 
make patients comfortable as their condition deteriorated. To make 
matters worse, there is very little research on PH being supported by 
the National Institutes of Health.
  Fortunately we have come a very long way in a relatively short period 
of time. There are now six FDA-approved therapies for PH with many, 
many more in the pipeline. People are living longer with a better 
quality of life than ever before. Our Federal health care agencies, 
including the National Institutes of Health, Centers for Disease 
Control and Food and Drug Administration are actively and aggressively 
engaged in the fight against PH.
  Those of us here on Capitol Hill are more aware of this disease than 
ever before. The 247 Representatives who cosponsored our PH bill in the 
last Congress are testament to that fact. But there is still more work 
that can and must be done as pulmonary hypertension afflicts over 
100,000 Americans and continues to strike women of child-bearing age in 
growing numbers.
  Representative Lois Capps has joined me in introducing the bill 
before us today, the Tom Lantos Pulmonary Hypertension Research and 
Education Act. This bill builds on what we have already accomplished 
and further emphasizes the need for more research, more training and 
more awareness.
  Specifically, it urges the NIH to aggressively pursue collaborative 
research into better treatments and provides funding to increase 
physician and public awareness of the disease to ensure early and 
accurate diagnoses. I am proud of what we have done together and 
believe that a cure for PH is just around the corner, so long as we 
continue to keep the National Institutes of Health and medical 
community focused.
  On behalf of pulmonary hypertension patients everywhere, I would like 
to thank Representative Lois Capps for her leadership of this bill, 
Energy and Commerce Chairman Dingell, Ranking Member Joe Barton, Health 
Subcommittee Chairman Frank Pallone, and, as I mentioned before, my 
dear friend, Nathan Deal, again, whose leadership was remarkable.
  I conclude with this, over the last 10 years, we have decided that if 
I did nothing else in Congress, I would find a cure for this incurable 
disease.
  I appreciate so much the Pulmonary Hypertension Association, which 
has raised, over the years, $10 million for research and education; the 
chairman of the association, Carl Hicks; its great president, Rino 
Aldrighetti; Katie Kroner and Gavin Lindberg, who have spent many years 
advocating on behalf of our patients in the association; Dr. Elizabeth 
Nabel, director of the National Heart, Lung and Blood Institute, who 
helped start the first Centers of Excellence for PH at the National 
Institutes of Health; and finally the staff of the Energy and Commerce 
Committee, including Jessica McNiece, Aarti Shaw, Brandon Clark, and 
Ryan Long.
  It takes a collaborative effort to tackle a disease like this. We are 
making progress, and I am eternally grateful for their support.
  Mr. PALLONE. Madam Speaker, I yield 2 minutes to the sponsor of the 
legislation, the gentlewoman from California (Mrs. Capps).
  Mrs. CAPPS. I thank the chairman of our Health subcommittee for 
recognizing me.
  Madam Speaker, I rise in support of H.R. 6568, for which I am proud 
to be the lead Democratic sponsor.
  I want to commend Congressman Kevin Brady for his tireless work on 
behalf of pulmonary hypertension awareness over the last several years. 
As the name of this legislation indicates, our dear friend and former 
colleague, Tom Lantos, was a champion of working against this disease 
because of a very personal connection, his lovely granddaughter, 
Charity.
  I am so proud that we could help the Lantos family fulfill their goal 
of seeing this bill acted on during the 110th Congress. I am sure that 
many of us will remember forever the day that Charity testified, that 
was in December of 2005.
  She testified before the Energy and Commerce Committee. She so 
eloquently relayed to us the challenges of getting properly diagnosed 
and then adjusting to her daily complex routine in order to cope with 
her illness at the same time she pursued her musical career.
  Pulmonary hypertension is a very rare disease, which is marked by 
increased blood pressure in the pulmonary artery, as has been 
described. There are very few treatments available, and this 
legislation is aimed at improving research and awareness about the 
disease so that we can find more effective treatments and, one day, a 
cure.
  I want to thank the Energy and Commerce majority and minority staff 
for working hard to bring this bill up today, for the ranking member of 
the minority Health committee for insisting that it come before us 
today, and for the lead sponsor, again, Kevin Brady, for his efforts on 
behalf of the pulmonary hypertension community.
  Of course, we thank the Lantos family for their advocacy on behalf of 
pulmonary hypertension, and the efforts to ensure this bill's passage 
in Tom Lantos' memory.
  Mr. DEAL of Georgia. Madam Speaker, I had the honor of chairing that 
hearing that Mrs. Capps just referred to back in 2005 in the Energy and 
Commerce Committee, Health Subcommittee, in which we had the first

[[Page 21826]]

hearing on pulmonary hypertension. The Honorable Tom Lantos' 
granddaughter, Charity, did testify. She was a compelling witness, and 
I think it is altogether fitting that this legislation be named in 
honor of her grandfather.
  I want to thank Mrs. Capps and Mr. Brady and all the others who have 
worked so hard on this legislation. As Mr. Brady pointed out, this is 
an excellent example of citizen advocates who have taken this issue to 
heart and who have literally pushed this all the way. Without their 
support, we probably would not have been able to get this legislation 
to the floor. I commend all those who have had a hand in it.
  Madam Speaker, I yield back the balance my time.
  Mr. PALLONE. Madam Speaker, I have no further requests for time. I 
would ask that everyone support this legislation, not only because of 
the issue of pulmonary hypertension and research and the need for it, 
but also as a tribute to Representative Lantos.
  Madam Speaker, I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from New Jersey (Mr. Pallone) that the House suspend the 
rules and pass the bill, H.R. 6568, as amended.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the bill, as amended, was passed.
  A motion to reconsider was laid on the table.

                          ____________________