[Congressional Record (Bound Edition), Volume 152 (2006), Part 5]
[House]
[Pages 5934-5936]
[From the U.S. Government Publishing Office, www.gpo.gov]




 SUPPORTING THE GOALS AND IDEALS OF NATIONAL CYSTIC FIBROSIS AWARENESS 
                                 MONTH

  Mr. STEARNS. Madam Speaker, I move to suspend the rules and agree to 
the concurrent resolution (H. Con. Res 357) supporting the goals and 
ideals of National Cystic Fibrosis Awareness Month.
  The Clerk read as follows:

                            H. Con. Res. 357

       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 35 years, an improvement from a life 
     expectancy of 10 years in the 1960s, 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 
     longevity;
       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 two dozen 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, 2006: 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 who have 
     cystic fibrosis and their families;
       (4) encourages early diagnosis and access to 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 an enhanced research program through a strong 
     Federal commitment and expanded public-private partnerships.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Florida (Mr. Stearns) and the gentleman from Massachusetts (Mr. Markey) 
each will control 20 minutes.
  The Chair recognizes the gentleman from Florida.


                             General Leave

  Mr. STEARNS. Madam Speaker, I ask unanimous consent that all Members 
may have 5 legislative days within which to revise and extend their 
remarks and insert extraneous material on this resolution.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Florida?
  There was no objection.
  Mr. STEARNS. Madam Speaker, I yield myself such time as I may 
consume.
  Madam Speaker, I rise today in support of H. Con. Res. 357, which 
supports the goals and ideals of National Cystic Fibrosis Awareness 
Month, beginning in May. Every year in the United States, about 1,000 
children are born with cystic fibrosis, or CF, a life-shortening 
genetic disease.
  According to the Cystic Fibrosis Foundation, those children face a 
median life expectancy of 36 years, an average that, fortunately, has 
continued to increase as science and research have developed better 
treatment and drugs. And while a median life expectancy of 36 is 
unacceptably low, that figure is cause for hope for those living with 
the disease and, of course, their families. They know that in 1955, the 
year parents of children suffering from this disease formed the Cystic 
Fibrosis Foundation, children born with CF usually did not live to 
attend preschool. As the life expectancy increases, those suffering 
with this disease and their families continue to work for a cure or a 
life-extending treatment.
  Madam Speaker, while a cure for cystic fibrosis remains illusive, the 
symptoms and effects of the disease are fairly simple. CF is one of the 
most common life-threatening genetic diseases in the United States. 
More than 30,000 people in the United States have CF, and over half of 
them are children.
  In addition, over 10 million Americans are unknowing, symptom-free 
carriers of the cystic fibrosis gene. Cystic fibrosis affects the lungs 
and digestive system.

                              {time}  1500

  The defective gene that causes CF triggers the production of 
abnormally thick mucus in the lungs that leads to restricted breathing, 
recurring lung infections, and in many cases digestive problems. The 
infections deteriorate the lungs and their capacity to deliver oxygen 
to the body, a condition that worsens over time and in many cases even 
leads to death or the need for a lung transplant. One of the goals of 
H. Con. Res. 357 is to promote the need for early diagnosis and the 
importance of newborn screening so that treatment of children with CF 
can begin as soon as possible to improve their health and longevity.
  The five decades that have passed since the founding of the Cystic 
Fibrosis Foundation have brought not only hope but years to the lives 
of those suffering from CF. The Cystic Fibrosis Foundation continues to 
be at the forefront of making more with less in the area of drug 
discovery and development. The Therapeutics Development Program, TDP, 
created and launched by the CF Foundation, has pioneered new ways to 
conduct cutting-edge, lifesaving research in a cost-effective and 
efficient manner. This program now includes 18 major research 
institutions across the country in an established clinical trials 
network. The TDP provides innovative companies with funding, raised 
through private donations to the CF Foundation, to undertake research 
and development on promising new drug candidates, and supports an 
extensive pipeline of potential new

[[Page 5935]]

therapies. In fact, the CF Foundation currently has more than 30 drugs 
and therapies in various stages of clinical trials, any one of which 
could dramatically improve the life of someone suffering from CF. I 
believe that the innovative programs like the Therapeutics Development 
Program are part of the blueprint for more efficient and cost-effective 
health care and should be supported. So, as you can see, Madam Speaker, 
CF Foundation-sponsored research is adding precious years to the lives 
of those living with the disease so that they might live long enough to 
benefit once a cure is found.
  Today there is more potential research on new drugs and therapies 
than funds to finance that lifesaving work. This is a problem created 
by a wealth of scientific riches, and one that I hope can be bridged by 
more public-private partnerships which leverage our world-class biotech 
and pharmaceutical companies with the capabilities of institutions like 
the National Institutes of Health to ensure that the discovery phase of 
identifying new drugs and compounds to treat cystic fibrosis continues. 
To that end the resolution before us today advocates strong 
partnerships between government resources like the NIH and nonprofits 
like the Cystic Fibrosis Foundation as a key means to improve care for 
those with ``orphan'' diseases like CF.
  Madam Speaker, in closing, I would like to commend my friend and 
colleague Mr. Markey from Massachusetts for his leadership and work 
supporting this resolution and for our partnership cochairing a new 
Congressional Cystic Fibrosis Caucus. The Congressional Cystic Fibrosis 
Caucus, like this resolution, is intended to provide Members and the 
American public a better understanding of cystic fibrosis and the need 
to support the incredible work that is being done by the Cystic 
Fibrosis Foundation as well as through public-private collaboration to 
find a cure.
  I would also like to thank all those Members on both sides of the 
aisle who have cosponsored H. Con. Res. 357 and those who have joined 
the Congressional Cystic Fibrosis Caucus. And anyone who is watching is 
welcome to call my office or Mr. Markey's office. We would like to have 
your support, and we look forward to it.
  So, my colleagues, please join me in honoring and supporting the 
goals and ideals of National Cystic Fibrosis Awareness Month by simply 
agreeing to H. Con. Res. 357.
  Madam Speaker, I reserve the balance of my time.


                Announcement by the Speaker Pro Tempore

  The SPEAKER pro tempore (Mrs. Drake). Members should direct their 
comments to the Chair and not to the television audience.
  Mr. MARKEY. Madam Speaker, I yield myself such time as I may consume.
  I thank my friend from Florida Mr. Stearns. He and I have partnered 
on the resolution and on cofounding the Congressional Cystic Fibrosis 
Caucus. And I want to thank him for his commitment to CF, its cause, 
and the difference that this institution can make in helping to find 
the cure. It is, without question, something that we can agree upon on 
a bipartisan basis.
  The resolution before us today is to support the goals and the ideals 
of the National Cystic Fibrosis Awareness Month, and it is really so 
that we can bring the most powerful four-letter word to this cause, and 
that word is ``hope''; hope that the United States Government will 
increase its funding, will help to find the cure for this dreaded 
disease, that we can give hope to the families who are affected by it. 
And today is a really important day on that path because for the first 
time we do have a caucus, and this resolution in a lot of ways will 
memorialize that and give more momentum to finding the cure.
  CF is one of the most common life-threatening genetic diseases in the 
United States. People with CF produce abnormally thick, sticky mucus, 
which makes breathing very difficult. They find, as a result, they 
cough and they wheeze constantly and are at constant risk for life-
threatening lung infections.
  Approximately 30,000 children and adults in the United States have 
cystic fibrosis, but it affects far more than those 30,000 people. It 
affects all of the families and the loved ones of those people who are 
struggling with this horrible disease. It affects the moms who have to 
wake up at 5 a.m. so that they can pound on their child's chest before 
they go to work. It affects their siblings who have to wait with their 
sister while she goes to yet another doctor's appointment. And it 
affects the dads who worry that their child will never grow up to have 
a normal life. 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. A few decades ago many children with CF did not live past 10 
years of age. Today life expectancy is 35 years of age, and much of 
these achievements are due to the hard work and the dedication of the 
Cystic Fibrosis Foundation. That is why CFF really stands for 
courageous fighting families, courageous fighting friends of those 
families.
  Yet even with this incredible work of our courageous fighting 
families, we still have a long way to go to provide the people with CF 
with a normal and 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.
  This is something which in the 21st century we should leave as a 
forgotten memory, but we can only do it if we provide hope now. It is 
the most powerful word in the English language: Hope that we can raise 
awareness of the families struggling with CF, hope that we can find 
better treatments and ultimately a cure, hope that our children will 
have to turn to the history books to find that there ever was such a 
thing as cystic fibrosis.
  I thank, again, the cochair of the caucus Mr. Stearns. This is now 
going to bring a larger, more powerful spotlight on this disease. And 
hopefully, working together in a bipartisan fashion, we can address 
this as a human issue and not as a Democrat or Republican issue.
  Mr. McGOVERN. Madam Speaker, I rise in support of H. Con. Res. 357, 
offered by the distinguished gentleman from Florida (Mr. Stearns). This 
resolution would support the goals and ideals of National Cystic 
Fibrosis Awareness Month.
  Cystic Fibrosis is one of the most common life-threatening genetic 
diseases in the United States. Approximately 30,000 people in the 
United States have cystic fibrosis, and about 1,000 new cases of cystic 
fibrosis are diagnosed each year. Tragically, more than half of those 
with CF are children. As I stand here today, more than 10 million 
Americans are unknowing, symptom-free carriers of the cystic fibrosis 
gene.
  Significant improvements have been made in the treatment of cystic 
fibrosis. Just a few decades ago, children with CF did not live past 10 
years of age. Today the life expectancy has improved, and the number of 
adults with CF has steadily grown. Even so, there is no cure for this 
disease, and much still must be done to provide people with CF with a 
normal and healthy life expectancy.
  Early diagnosis is the key, and that is why it's so important that we 
work to further public awareness and understanding of cystic fibrosis. 
We must increase support for those affected by this disease and ensure 
that they have access to quality care, and we also must support 
research to find a cure for CF.
  I am proud to provide my support to this cause, and I ask my 
colleagues to join me in supporting H. Con. Res. 357 so that the month 
of May can be dedicated to educating all Americans about cystic 
fibrosis, about the courage of those who suffer from this disease, and 
about the important research underway to find a cure.
  Ms. HART. Madam Speaker, today, as we consider H. Con Res. 357 to 
support the goals of National Cystic Fibrosis (CF) Awareness Month in 
May, I would like to bring attention to such efforts in my district and 
in western Pennsylvania.
  One such family in my district, the Nicotras, are doing just that. 
``Hayden's Heroes'' was formed in 2005 by Sam and Rhea Nicotra to 
support CF research. The Nicotras' grandson, Hayden Klein, was 
diagnosed with CF in 2004, when he was just one week old. The Kleins 
and their family faced the questions familiar to many CF patients and 
their loved

[[Page 5936]]

ones about genetic factors, the difficulty in diagnosing CF and, of 
course, the challenges in treating and managing the disease.
  The Kleins had no history of the disease on either side of the family 
and, since CF patients can look healthy, there is no way to diagnose 
the disease just by looking at him or her. Clearly, cystic fibrosis is 
stealthy; we have much to learn about its origins, how to treat it and, 
ultimately, how to defeat it.
  Fortunately, many Americans are committed to providing the resources 
to wage this battle, and, with National CF Month approaching, it is 
important that we recognize the many local resources to support this 
important task.
  The local chapter of the Cystic Fibrosis Foundation is an active 
participant in the national Great Strides walk to raise funds for CS 
research--participants across the country have succeeded in raising 
more than $150 million since 1989. The local chapter will participate 
in this year's walk next month at North Park Lake in my district.
  The local CF Foundation office also encourages friends and families 
of CF patients to provide support for such resources and research, and 
the Nicotras have been local leaders with Hayden's Heroes, which is 
hosting a ``Dancing with the Pittsburgh Stars'' event to raise 
awareness of the disease and support local resources, and a local 
talent-training organization in my district, the In Tune Studio, is 
also working on an event to support CF research.
  It is through such community efforts that we will understand more 
about CF and treat this disease, and I commend the dedication and 
tenacity of the local chapter of the CF Foundation and, in particular, 
the Nicotras and their family, for advancing this important cause.
  I ask my colleagues in the United States House of Representatives to 
join me in recognizing National Cystic Fibrosis (CF) Awareness Month 
and the Cystic Fibrosis Foundation. It is an honor to represent the 
Fourth Congressional District of Pennsylvania and a pleasure to salute 
a worthy cause like the Cystic Fibrosis Foundation.
  Mr. MARKEY. Madam Speaker, I yield back the balance of my time.
  Mr. STEARNS. Madam Speaker, I have no further requests for time, and 
I yield back the balance of my time.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Florida (Mr. Stearns) that the House suspend the rules 
and agree to the concurrent resolution, H. Con. Res. 357.
  The question was taken.
  The SPEAKER pro tempore. In the opinion of the Chair, two-thirds of 
those present have voted in the affirmative.
  Mr. STEARNS. Madam Speaker, on that I demand the yeas and nays.
  The yeas and nays were ordered.
  The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the 
Chair's prior announcement, further proceedings on this question will 
be postponed.

                          ____________________