[Congressional Record Volume 144, Number 30 (Wednesday, March 18, 1998)]
[Senate]
[Page S2230]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                       TRIBUTE TO CHARLES TOLCHIN

 Mr. LEAHY. Mr. President, recently Charles Tolchin made 
remarks at the ground breaking at the new NIH Clinical center. While 
speeches at ground breakings are not normally something of note, these 
are.
  Charles Tolchin suffered from cystic fibrosis and normally would not 
have lived even into his teens. Today, he is nearly 30, has survived a 
double-lung transplant, and has shown it is possible to completely beat 
the odds.
  He makes it clear that he did this with the help of the people at 
NIH, and I ask that the text of his statement be printed in the Record 
so that this achievement can be shared with all.
  The statement follows:

                      A Living Shrine to My Heros

                          (By Charles Tolchin)

       The new Mark Hatfield Clinical Research Center is a living 
     shrine to my heros. NIH researchers define dedication, faith, 
     and infectious enthusiasm. They have made an enormous impact 
     on my life.
       I have Cystic Fibrosis, A genetic lung and digestive 
     disease affecting 30,000 Americans. When I was five, doctors 
     used the sweat test to diagnose me. It was developed here at 
     NIH forty years ago by Dr. Paul D'Saint Agnese and is still 
     the primary diagnostic tool for CF.
       Over the past ten years, NIH has invested millions of 
     dollars in CF research. That investment has reaped a golden 
     return. In 1989, NIH funded scientists Francis Collins, Jack 
     Riordan and Lap Chee Tsui, isolated the gene that causes CF. 
     Since then, CF has led the pack in gene replacement therapy. 
     Scientists are now trying to create a delivery system for 
     inserting healthy genes into patients' lungs.
       NIH funds research designed to gain a deeper understanding 
     of CF on a molecular level. Why do CF lung cells act in the 
     abnormal manner that they do? Every year, when I hear a 
     lecture on the latest breakthroughs, I'm amazed at the art on 
     the slides. It used to be very simple: here's a cf cell. But 
     now, the art is highly defined, illustrating how the CF 
     Transmembrane Regulator fails to transport water, sodium and 
     chloride across the cell wall.
       This gained knowledge is leading to new treatments, also 
     funded by NIH. In 1993, the FDA approved a new drug for CF, 
     Pulmozyme, aimed at thinning the thick mucous that plugs our 
     lungs. I inhaled it twice a day for four years. NIH research 
     has led to the development of nebulized Tobramycin, and 
     Ciprofloxacin, two highly effective antibiotics. Both have 
     fought biological warfare in my lungs. NIH research has led 
     to the use of ibuprofen to reduce inflammation in the lungs. 
     And NIH research led to the Flutter device, which I used 
     three times a day to help cough up my mucous.
       What impact has all of this research had on my life? When I 
     was diagnosed at the age of 5, life expectancy was 8. Now, 
     I'm 29, and life expectancy is 31. My whole life, that number 
     has gone up because of the great strides in CF research.
       I have also benefitted from NIH's outstanding clinical 
     care. I became a patient back in 1977. I have received 
     outstanding care from nurses who define compassion. Many have 
     treated me for over ten years, adding the rare dimension of 
     continuity to medicine. Pharmacists, x-ray technicians, 
     respiratory therapists and nutritionists have all contributed 
     their talents to my well-being. Finally, the physicians at 
     NIH are world-class. My doctor, Milica Chernick, is a fine 
     example. Having a lung disease means an endless procession of 
     cold stethoscopes on your chest. Dr. Chernick always made 
     sure to warm hers before taking a listen.
       Because of NIH clinical care, and NIH and CF Foundation 
     research, I stayed healthy enough to receive a double lung 
     transplant at the University of North Carolina, Chapel Hill, 
     this past April. The changes in my life have been profound. 
     No longer do I spend five hours a day on respiratory therapy. 
     I sleep all night without coughing. In fact, I never cough. 
     Now I have the energy to go out and do things all day, to 
     shed an isolated existence for one of vitality and 
     stimulation.
       The changes in my life have also been subtle. The only rule 
     I broke after transplant was that I started driving a week 
     before my doctors granted me permission. When I did so for 
     the first time, I felt wind on my arms and realized that it 
     was my own breath. When I went swimming for the first time 
     after my transplant, I realized that I didn't need to keep a 
     gym bag with a box of kleenex by the side of the pool.
       Throughout my lifetime, medicine and research have 
     dovetailed together. Clinical care at NIH kept me healthy 
     enough to receive my transplant. Research at NIH helped 
     provide the therapies I received.
       We still do not have a cure for CF, but thanks to brilliant 
     scientists and NIH's deep commitment, I am confident we will. 
     In this living shrine, my heros fight against time, against 
     persistent and pervasive adversaries, and against the 
     unknown. I for one, am extremely grateful.

                          ____________________