[Congressional Record (Bound Edition), Volume 154 (2008), Part 11]
[House]
[Pages 15032-15035]
[From the U.S. Government Publishing Office, www.gpo.gov]




 SUPPORTING THE GOALS AND IDEALS OF NATIONAL CYSTIC FIBROSIS AWARENESS 
                                 MONTH

  Mrs. CAPPS. Mr. Speaker, I move to suspend the rules and agree to the 
concurrent resolution (H. Con. Res. 299) supporting the goals and 
ideals of National Cystic Fibrosis Awareness Month, as amended.
  The Clerk read the title of the concurrent resolution.
  The text of the concurrent resolution is as follows:

                            H. Con. Res. 299

       Whereas cystic fibrosis is one of the most common life-
     threatening genetic diseases in the United States and one for 
     which there is no known cure;
       Whereas the average life expectancy of an individual with 
     cystic fibrosis is 37 years--an improvement relative to the 
     1960s when children with cystic fibrosis did not live long 
     enough to attend elementary school, but still unacceptably 
     short;
       Whereas approximately 30,000 people in the United States 
     have cystic fibrosis, more than half of them children;
       Whereas one of every 3,500 babies born in the United States 
     is born with cystic fibrosis;
       Whereas more than 10,000,000 Americans are unknowing, 
     symptom-free carriers of the cystic fibrosis gene;
       Whereas the Centers for Disease Control and Prevention 
     recommends that all States consider newborn screening for 
     cystic fibrosis;
       Whereas the Cystic Fibrosis Foundation urges all States to 
     implement newborn screening for cystic fibrosis to facilitate 
     early diagnosis and treatment which improves health and life 
     expectancy;
       Whereas prompt, aggressive treatment of the symptoms of 
     cystic fibrosis can extend the lives of people who have the 
     disease;
       Whereas recent advances in cystic fibrosis research have 
     produced promising leads in gene, protein, and drug therapies 
     beneficial to people who have the disease;
       Whereas innovative research is progressing faster and is 
     being conducted more aggressively than ever before, due, in 
     part, to the Cystic Fibrosis Foundation's establishment of a 
     model clinical trials network;
       Whereas although the Cystic Fibrosis Foundation continues 
     to fund a research pipeline for more than 30 potential 
     therapies and funds a nationwide network of care centers that 
     extend the length and quality of life for people with cystic 
     fibrosis, lives continue to be lost to this disease every 
     day;
       Whereas education of the public about cystic fibrosis, 
     including the symptoms of the disease, increases knowledge 
     and understanding of cystic fibrosis and promotes early 
     diagnosis; and
       Whereas the Cystic Fibrosis Foundation will conduct 
     activities to honor National Cystic Fibrosis Awareness Month 
     in May, 2008: Now, therefore, be it
       Resolved by the House of Representatives (the Senate 
     concurring), That the Congress--
       (1) honors the goals and ideals of National Cystic Fibrosis 
     Awareness Month;
       (2) promotes further public awareness and understanding of 
     cystic fibrosis;
       (3) advocates for increased support for people with cystic 
     fibrosis and their families;
       (4) encourages early diagnosis and access to high-quality 
     care for people with cystic fibrosis to improve the quality 
     of their lives; and
       (5) supports research to find a cure for cystic fibrosis by 
     fostering enhanced research programs and expanded public-
     private partnerships.

  The SPEAKER pro tempore. Pursuant to the rule, the gentlewoman from 
California (Mrs. Capps) and the gentleman from Texas (Mr. Burgess) each 
will control 20 minutes.
  The Chair recognizes the gentlewoman from California.


                             General Leave

  Mrs. CAPPS. Mr. Speaker, I ask unanimous consent that all Members may 
have 5 legislative days in which to revise and extend their remarks and 
include extraneous material on the resolution under consideration.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentlewoman from California?
  There was no objection.
  Mrs. CAPPS. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, I rise in strong support of House Concurrent Resolution 
299, a resolution expressing support for the goals and ideals of 
National Cystic Fibrosis Awareness Month. I would like to commend my 
colleagues on the Energy and Commerce Committee, Representatives Ed 
Markey and Cliff Stearns, for their diligent work in bringing this 
resolution before us today.
  Cystic fibrosis is a life-threatening, in fact it is a fatal genetic 
disorder, that currently afflicts over 30,000 Americans, with 1,000 new 
cases diagnosed each year. The disease affects the respiratory and 
digestive systems, causing serious health problems in organs such as 
the lungs, intestines, and the pancreas. Cystic fibrosis has no cure, 
and although treatment has been greatly improved, the average life 
expectancy for people with this disease is only 37 years.

[[Page 15033]]

  With greater awareness of cystic fibrosis, we hope to encourage much 
more investment and research and treatment into this disease. That is 
why I am proud to cosponsor House Concurrent Resolution 299 which 
encourages Congress to support the National Cystic Fibrosis Awareness 
Month.
  The resolution rightly praises the many public-private partnerships 
which have sprung up in the last few years, and it also stresses the 
promise of innovative research on cystic fibrosis, and this is the 
environment that we need today which is critical to finding a cure for 
this fatal disease.
  I urge my colleagues to join me in support of House Concurrent 
Resolution 299.
  I reserve the balance of my time.
  Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume, 
and I rise in support of House Concurrent Resolution 299 that supports 
the goals and ideals of Cystic Fibrosis Awareness Month.
  I thank the sponsor of the resolution, Ed Markey of Massachusetts, 
and cosponsor, Cliff Stearns of Florida, for their diligent work on 
this issue. And I would like to thank my colleague on the Energy and 
Commerce Committee, the gentlelady from California, for presenting the 
bill before us today.
  H. Con. Res. 299 raises public awareness by observing Cystic Fibrosis 
Awareness Month and recognizing the 30,000 people in the United States 
that have this hereditary disease. Cystic fibrosis affects the lungs, 
it affects virtually every system in the body, and certainly 
complications can arise such as life-threatening lung infections, and 
gastrointestinal complications that lead to malabsorption. Of the 
30,000 Americans affected by this inherited and chronic condition, more 
than half are children.
  Mr. Speaker, significantly, in the 1950s, very few children with 
cystic fibrosis lived to attend elementary school. Today, advances in 
research and medical treatments have further enhanced and extended the 
life of children, and now even adults with cystic fibrosis. In 2006, 
the predicted median age of survival had risen to 37 years, and many 
people with the condition can now expect to live into their 40s and 
beyond, a significant achievement.
  When I began my medical studies back in the mid-1970s, cystic 
fibrosis was, indeed, a disease of childhood. And now we have many more 
people living well into young adulthood with the condition. And the 
expectation is with further advances in research, this age will greatly 
increase in the next several years.
  It is important that we recognize Cystic Fibrosis Awareness Month and 
educate the public about the symptoms of the disease, increase the 
knowledge and understanding of the condition, and promote early 
detection for the new cases that are diagnosed each year. And the bill 
makes reference to 3,500 children that are born each year with cystic 
fibrosis.
  I thank the Cystic Fibrosis Foundation for their efforts and 
continued funding of research and potential therapies. One of the 
intriguing things about treatments on the horizon, certainly we are all 
aware of changes that are going on in genome research and the fact that 
there may be new therapies that none of us dreamed of a few years ago. 
Compacted nanoparticles of aerosolized DNA taken as a nasal inhalant 
have made some dramatic changes in this disease, and certainly we look 
forward to many more advances on these fronts.
  Certainly the hard work of the foundation has improved the life of 
the 70,000 people worldwide suffering from cystic fibrosis. And 
hopefully one day they will lead the way in finding a cure.
  Mr. Speaker, I urge my colleagues to support this worthwhile 
resolution.
  Mr. Speaker, I reserve the balance of my time.
  Mrs. CAPPS. Mr. Speaker, I have no further speakers, and I reserve 
the balance of my time.
  Mr. BURGESS. Mr. Speaker, I have additional speakers on the way, and 
while awaiting their arrival, let me just also mention that this bill, 
coming as it did through our Committee on Energy and Commerce, for 
major pieces of health care legislation, that is the correct approach, 
for it to come through the committee process, committee hearings and 
subcommittee and committee markups.
  Later on today we will have an opportunity to vote on a Presidential 
veto of the Medicare bill that we passed on this House floor a few 
weeks ago.

                              {time}  1145

  That bill was an example of not following regular procedure, and that 
is what has made this issue that has embraced the correction of the 
physician reimbursement cuts--embraced by both sides of the aisle, but 
it has made it very contentious for this body. It was all unnecessary. 
Not a person in this body really opposed correcting the physician cuts.
  Really the only issue was the approach. We could have had an 
opportunity to have a bill marked up in our subcommittee or in our full 
committee. I would have welcomed the opportunity to propose amendments, 
to perhaps perfect that legislation that would have rendered the whole 
process of this very contentious standoff we have now with the White 
House, would have rendered that absolutely unnecessary.
  There are good ideas up there on both sides of the aisle. I would 
again use this opportunity to express how important it is that this 
House follow regular procedure, particularly on these major health care 
bills. This bill that the President will veto today, that we will have 
an opportunity to vote on the override, this will affect the delivery 
of health care for the next 30 or 40 years in ways that many of us have 
no ability to comprehend right now.
  It's unfortunate, because we had the opportunity to do the markups in 
subcommittee and full committee, and, for whatever reason, the decision 
was made to bring it up on suspension, push it to the last minute, so 
there really was no opportunity to say, well, let's take it back and go 
through committee, because we were up against a hard deadline.
  Everybody knew that last December. We had passed a 6-month extension. 
It was one of the most insulting things we could have done to the 
medical profession in this country was give them a 6-month reprieve on 
the rollback of the Medicare reimbursement rates.
  Instead, we gave them a 6-month reprieve, and we pushed it up to the 
very last minute, so there was no other option. It's an up or down 
vote. Take it or leave it. You have got this bill. It has got a lot of 
other things appended to it.
  We heard no discussion about the unfunded mandates for e-prescribing 
that were tagged onto this bill. I doubt many of the regular physicians 
out there in practice today really understand what we have passed for 
them, what we have layered on to their overhead that grows by leaps and 
bounds every year. It's the additional regulations that have been 
placed on physician practices.
  This is an example today of doing things the right way. Later on this 
afternoon we will have an example of doing things the wrong way. I 
would urge the leadership of this House to pay attention to this.
  We have good individuals on both sides of the aisle that have are 
serving in our committees of jurisdiction. Let's not circumvent that 
committee process and bring things up on the suspension calendar that 
really are substantial changes in Federal policy that really should go 
through regular order.
  Mr. Speaker, I reserve the balance of my time.
  Mrs. CAPPS. Mr. Speaker, I reserve the balance of my time.
  Mr. BURGESS. Mr. Speaker, well, again, we do have other speakers who 
are reportedly on the way.
  Let me just add another couple of comments, because I have heard some 
discussion that we will have another opportunity to vote on SCHIP 
legislation before this House comes to a conclusion.
  This, again, would be a mistake to bring it up through the suspension 
process. We have until March of 2009 to reauthorize the SCHIP, the 
State Children's Health Insurance Program.

[[Page 15034]]

  I would urge this House to take up the work of that now. Let's begin 
in our committee this year. We actually don't have to do the bill until 
next year. We can do a lot of the groundwork this year, and that would 
be the correct way to approach that.
  Mr. Speaker, I reserve the balance of my time.
  Mrs. CAPPS. Mr. Speaker, I am pleased to yield 2 minutes to the 
author of the bill, Mr. Markey from Massachusetts.
  Mr. MARKEY. I thank the gentlelady, and let me begin by expressing my 
appreciation to Chairman Dingell, Ranking Member Barton, Mr. Pallone 
and Mr. Deal for their support of this important resolution, but I 
would also like to extend my special thanks to my friend and cofounder 
of the Congressional Cystic Fibrosis Caucus, Cliff Stearns of Florida. 
Thank you, Cliff, for your commitment to this issue.
  The resolution before us today is intended to highlight the 
importance of beating this dreadful, cruel disease, and bring hope to 
people with cystic fibrosis and their loved ones. Approximately 30,000 
children and adults in the United States have cystic fibrosis, a life-
threatening genetic lung disease for which there is no cure.
  In my home State of Massachusetts, 800 families are affected by this 
horrible disease. That's a lot of moms that wake up at 5 in the morning 
so that they can pound on their child's chest to clear the abnormally 
thick, sticky mucus that makes breathing difficult. That's a lot of 
children who cough and wheeze and are at constant risk for life-
threatening lung infections. That's a lot of dads who want their child 
to have a healthy life but have to worry about the unpleasant 
alternative of a shortened life expectancy marked by frequent 
admissions to the hospital.
  This resolution is about supporting these families and providing them 
with the hope for a better future. Significant improvements have been 
made in the treatment of cystic fibrosis. Fifty years ago many children 
with CF did not live past 10 years of age. Today, the life expectancy 
is 37 years.
  Many of those achievements are due to the hard work and dedication of 
the Cystic Fibrosis Foundation. Yet we still have a long way to go to 
provide people with CF with a normal and a healthy life. It is time for 
Congress to become more involved in the pursuit of a cure. We need to 
make a greater investment in research and make a stronger commitment to 
the people with CF, their families, and their caretakers. The cystic 
fibrosis community has ensured that we understand the unique challenges 
that face people.
  The SPEAKER pro tempore. The time of the gentleman from Massachusetts 
has expired.
  Mrs. CAPPS. I yield my colleague an additional minute.
  Mr. MARKEY. The cystic fibrosis community has ensured that we 
understand the unique challenges that face people with cystic fibrosis. 
With this resolution we express our support for the mission to find a 
cure or more control over this disease.
  I thank the gentlelady and again, I thank my friend from Florida (Mr. 
Stearns) and all of those in the cystic fibrosis community, especially 
my life-long friend, Joe O'Donnell, who has dedicated his life to 
finding the cure for this disease.
  Mr. BURGESS. Mr. Speaker, I yield 5 minutes to the gentleman from 
Florida (Mr. Stearns), a cosponsor of the resolution.
  Mr. STEARNS. Mr. Speaker, I stand before my colleagues on the House 
floor today to lend my strong support to this House Concurrent 
Resolution 299, Supporting the Goals and Ideals of National Cystic 
Fibrosis Awareness Month.
  I am also honored to cochair this with my distinguished colleague 
from Massachusetts, Mr. Ed Markey, and I look forward to passage of 
this resolution. He and I have worked on this together. We are very 
pleased that, finally, it's coming to the floor, and hopefully will 
pass today.
  My colleagues, this is a disease that affects 30,000 Americans living 
in this country, more than half of which are children. One out of every 
3,500 babies born in the U.S. today has cystic fibrosis, with 70 
percent of the cases diagnosed by age 2 and 1,000 new cases diagnosed 
each year.
  In my home State of Florida, there are roughly 1,100 patients who 
suffer each and every day from this debilitating disease. It's cruel. 
That is 1,100 too many. These CF patients have to endure hours of 
treatment each day just to stay relatively healthy and maintain normal 
lung functions. Treatments range from daily air clearance techniques to 
intensive nutrition and drug therapies, and even to lung transplants in 
the most severe cases.
  People suffering from CF have two copies of a defective gene, which 
causes the body to produce abnormally thick sticky mucus which clogs 
the lungs and can result in fatal lung infections. This kind of mucus 
can also obstruct the pancreas, making it difficult for people with CF 
to absorb nutrients, simple nutrients, in food. Unfortunately, more 
than 10 million Americans are unknowingly symptom-free carriers of the 
CF gene.
  Now, the residents of Florida have recognized there is a real need 
for CF care and research. There are 15 specialized centers and clinics 
for cystic fibrosis care in my home State of Florida, including one at 
the University of Florida, which I represent here in Congress.
  My colleagues, there is no cure for CF, even though it is one of the 
most common, life-threatening diseases in the United States. Now, 50 
years ago, CF was considered a death sentence, as there were no drugs 
to combat and control the symptoms.
  In 1955, a child born with CF was not expected to live long enough to 
attend elementary school. Today, the median age of survival for a CF 
patient is 37.
  I am proud to say there are five drugs on the market, and there's 
over 30 new drugs that are in various stages of development. These 
drugs are helping children born with CF to live significantly longer 
and healthier lives. People with CF are living longer. Over 40 percent 
of the CF population is now age 18 or older.
  But that is not enough, my colleagues. We need more research and more 
funding, and we can't stop until we find the cure. I believe in the 
ingenuity and strong ethic of the American people. I believe we have 
the brain power and the drive to cure this disease today.
  I would like to recognize the Cystic Fibrosis Foundation, which has 
led the development of these promising treatments through an innovative 
business approach to drug discovery and development. The Cystic 
Fibrosis Foundation has entered into partnerships with biotechnology 
and pharmaceutical companies in an effort to find a cure, a simple cure 
for this disease.
  As a result of their efforts, promising potential drug therapies to 
correct the cause of the disease are now entering clinical trials in CF 
patients, and new therapies that treat the symptoms of this disease are 
now helping patients every day as we speak.
  In the past 5 years, the Cystic Fibrosis Foundation and its 
subsidiaries have invested over $650 million in drug research. I 
commend them for their commitment to innovation and for acting as a 
facilitator in the development of these important new drugs.
  With the support of the foundation, programs like the one at the 
University of Florida CF and Pediatric Pulmonary Disease Center are 
simply improving the health outcome of patients who have cystic 
fibrosis. In the past 5 years in the State of Florida, CF research and 
care supported by the CF Foundation has totaled $3\1/2\ million.
  I urge my colleagues to recognize the achievements of organizations 
like the Cystic Fibrosis Foundation, and to bring awareness to and 
honor to the thousands of Americans suffering from CF every day, by 
simply passing this resolution.
  Mrs. CAPPS. Mr. Speaker, I continue to reserve my time.
  Mr. BURGESS. Mr. Speaker, I have no more speakers at this time, and I 
urge my colleagues to vote in favor of this worthwhile resolution.
  I yield back the balance of my time.
  Mr. VAN HOLLEN. Mr. Speaker, as a member of the Congressional Cystic 
Fibrosis Caucus, I rise in strong support of H. Con. Res.

[[Page 15035]]

299, which supports the goals and ideals of National Cystic Fibrosis 
Awareness Month.
  According to the Cystic Fibrosis Foundation, which is located in my 
congressional district in Bethesda, Maryland, more than 30,000 
Americans suffer from cystic fibrosis. Approximately 1,000 new cases of 
cystic fibrosis are diagnosed each year. It is an inherited chronic 
disease that causes thick mucus to build up in the lungs and other 
organs, causing life-threatening lung infections and serious digestive 
complications.
  We have made significant progress in fighting cystic fibrosis, but 
there is still much more to do. In the 1950s, few children with cystic 
fibrosis were expected to live to attend elementary school. Today, 
thanks to past funding of cystic fibrosis research, people with cystic 
fibrosis can expect to live into their thirties and forties. While that 
figure is still unacceptably low, it is cause for hope for those living 
with the disease and their families. We must continue to fund cystic 
fibrosis research at the National Institutes of Health so that new 
treatments and, hopefully, a cure, can be developed in which people 
with cystic fibrosis can live a normal life expectancy. And we must 
continue to raise public awareness and education about cystic fibrosis, 
and to increase support for those affected by the disease.
  Mr. Speaker, I am proud to be a cosponsor of this resolution, and I 
encourage my colleagues to join me in supporting it.
  Mrs. CAPPS. Mr. Speaker, I have no further requests for time.
  I would like to thank the leadership of Energy and Commerce Committee 
and the authors of the legislation and the demonstration of strong 
bipartisan support for this resolution, and urge our colleagues to 
support and pass House Concurrent Resolution 299, as it has been 
amended.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentlewoman from California (Mrs. Capps) that the House suspend the 
rules and agree to the concurrent resolution, H. Con. Res. 299, as 
amended.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the concurrent resolution, as amended, was 
agreed to.
  A motion to reconsider was laid on the table.

                          ____________________