[Congressional Record (Bound Edition), Volume 150 (2004), Part 2]
[Senate]
[Pages 1731-1732]
[From the U.S. Government Publishing Office, www.gpo.gov]




                         SUBMITTED RESOLUTIONS

                                 ______
                                 

   SENATE RESOLUTION 298--DESIGNATING MAY 2004 AS ``NATIONAL CYSTIC 
                       FIBROSIS AWARENESS MONTH''

  Mr. CAMPBELL (for himself, Ms. Murkowski, Mrs. Lincoln, Mrs. Murray, 
Ms. Landrieu, Mr. Biden, Mr. Bunning, Mr. Dorgan, Mr. Johnson, and Mr. 
Fitzgerald) submitted the following resolution; which was referred to 
the Committee on the Judiciary:

                              S. Res. 298

       Whereas cystic fibrosis, characterized by chronic lung 
     infections and digestive disorders, is a fatal lung disease;
       Whereas cystic fibrosis is 1 of the most common genetic 
     diseases in the United States and 1 for which there is no 
     known cure;
       Whereas more than 10,000,000 Americans are unknowing 
     carriers of the cystic fibrosis gene;
       Whereas 1 of every 3,500 babies born in the United States 
     is born with cystic fibrosis;
       Whereas newborn screening for cystic fibrosis has been 
     implemented by 11 States and facilitates early diagnosis and 
     treatment which improves health and longevity;
       Whereas approximately 30,000 people in the United States 
     have cystic fibrosis, many of them children;
       Whereas the average life expectancy of an individual with 
     cystic fibrosis is in the early thirties, an improvement from 
     a life expectancy of 10 years in the 1960s, but still 
     unacceptably short;
       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 this innovative research is progressing faster and 
     is being conducted more aggressively than ever before, due in 
     part to the establishment of a model clinical trials network 
     by the Cystic Fibrosis Foundation; and
       Whereas education of the public on cystic fibrosis, 
     including the symptoms of the disease, increases knowledge 
     and understanding of cystic fibrosis and promotes early 
     diagnosis: Now, therefore, be it
       Resolved, That the Senate--
       (1) designates May 2004 as ``National Cystic Fibrosis 
     Awareness Month'';
       (2) requests that the President issue a proclamation--
       (A) designating the month of May 2004 as ``National Cystic 
     Fibrosis Awareness Month''; and
       (B) calling on the people of the United States to promote 
     awareness of cystic fibrosis and actively participate in 
     support of research to control or cure cystic fibrosis, by 
     observing the month with appropriate ceremonies and 
     activities; and
       (3) supports the goals of--
       (A) increasing the quality of life for individuals with 
     cystic fibrosis by promoting public knowledge and 
     understanding in a manner that will result in earlier 
     diagnoses;
       (B) encouraging increased resources for research; and

[[Page 1732]]

       (C) increasing levels of support for people who have cystic 
     fibrosis and their families.

  Mr. CAMPBELL. Mr. President, today I am submitting a resolution 
recognizing the month of May, 2004, as National Cystic Fibrosis 
Awareness Month. I am pleased to be joined by nine of my colleagues who 
are original cosponsors of the resolution. We are hopeful that greater 
awareness of cystic fibrosis (CF) will lead to a cure.
  The resolution is similar to one which I submitted last year, S. Res. 
98, declaring a National Cystic Fibrosis Awareness Week, which was 
agreed to by unanimous consent on September 25, 2003. Since then, I 
have received input from the National Cystic Fibrosis Foundation ( CFF) 
and the National Cystic Fibrosis Awareness Committee and have updated 
the information accordingly.
  Cystic fibrosis is one of the most common fatal genetic diseases in 
the United States and there is no known cure. It affects approximately 
30,000 children and adults in the United States. As recently as 25 
years ago, most children born with cystic fibrosis died in early 
childhood and few survived to their teenage years.
  Today, the average life expectancy of an individual with cystic 
fibrosis is in the early thirties, an improvement from a life 
expectancy of 10 years in the 1960s, but still unacceptably short. The 
difference stems from productive research which has led to an 
understanding of the way cystic fibrosis causes life-threatening damage 
and to the development of preventive techniques and treatments.
  While there is no cure, early detection and prompt treatment can 
significantly improve and extend the lives of those with CF. My home 
state of Colorado was one of the first States to require CF screening 
for newborns. Happily, many more States are now performing this simple 
test.
  And, since the discovery of the defective CF gene in 1989, CF 
research has greatly accelerated. I am proud that Colorado is home to 
the University of Colorado Health Sciences Center, including the 
Children's Hospital, the National Jewish Medical and Research Center 
and the Anschutz Centers for Advanced Medicine, all of which are 
actively involved in CF research and care. The Children's Hospital is 
one of a number of innovative Therapeutics Development Centers 
nationwide performing cutting edge clinical research to develop new 
treatments for CF.
  Currently, the CF Foundation oversees potential CF products in its 
drug development pipeline, including those in clinical trials. In 
addition, small pilot trials and large clinical studies are carried out 
in the CF Foundation-accredited care centers across the United States. 
Organizations such as the Cystic Fibrosis Research, Inc. also sponsor 
studies for treatment of the disease. Efforts such as these throughout 
the nation are providing a greater quality of life for those who have 
CF. We applaud these efforts.
  While I am encouraged by the CF research in Colorado and elsewhere, 
more needs to be done. I believe we can increase the quality of life 
for individuals with Cystic Fibrosis by promoting public knowledge and 
understanding of the disease in a manner that will result in earlier 
diagnoses, more fund raising efforts for research, and increased levels 
of support for those who have CF and their families.
  Therefore, I urge my colleagues to act on this resolution so we can 
move another step closer to eradicating this disease.

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