[Congressional Record (Bound Edition), Volume 146 (2000), Part 13]
[Senate]
[Page 18915]
[From the U.S. Government Publishing Office, www.gpo.gov]


[[Page 18915]]

       COMBATING CHILDHOOD CANCER AND DUCHENNE MUSCULAR DYSTROPHY

  Mr. HUTCHINSON. Mr. President, the month of September is Childhood 
Cancer Awareness Month. Contrary to public perception, cancer is not 
just an adult disease. Cancer is the second leading cause of childhood 
deaths, second only to accidents. Cancer strikes 46 children, or two 
classrooms of children, every school day. In 1975, only 35 percent of 
children with cancer survived more than five years. Thanks to modern 
medicine, 70 percent of children diagnosed with cancer survive. Thirty 
percent, however, do not.
  Childhood cancer has a unique set of characteristics and problems 
which researchers are still trying to find answers to. While most adult 
cancers result from lifestyle factors, such as smoking, diet, 
occupational, and other exposure to cancer-causing agents, the causes 
of most childhood cancers, are not yet known. While adult cancers are 
primarily those of the lung, colon, breast, prostate and pancreas, 
childhood cancers are mostly those of the white blood cells 
(leukemias), brain, bone, the lymphatic system and tumors of the 
muscles, kidneys and nervous system. Childhood cancers further differ 
from adult cancers in that they often have spread to other parts of the 
body by the time they are diagnosed.
  Our goal must be to increase funding for research, early detection 
and treatment, and prevention of childhood cancer. The member 
institutions of the Children's Oncology Group, C.O.G., provide 
treatment for up to 90 percent of all children with cancer in North 
America. The Children's Oncology Group is supported, in part, by 
federal funds from the U.S. National Cancer Institute and by private 
funds raised by the National Childhood Cancer Foundation. The National 
Cancer Institute is slated to receive $3.8 billion in Fiscal Year 2001 
for cancer research. Yet childhood cancer is one of many focuses of the 
NCI's research, and it certainly is not among the top funding 
priorities.
  I have worked with my fellow colleagues on the Senate Health, 
Education, Labor, and Pensions Committee to raise awareness about the 
need for greater focus on childhood cancer, and I am delighted that the 
Senate will today pass legislation to address a number of pressing 
children's health issues. In particular, I want to thank Senator Frist, 
the author of this legislation, for working with me to include language 
directing the Secretary of Health and Human Services to study 
environmental and other risk factors for childhood cancers and to carry 
out projects to improve treatment outcomes among children with cancer 
--such projects shall include expansion of data collection and 
population surveillance efforts to include childhood cancers 
nationally, the development of a uniform reporting system nationwide 
for reporting the diagnosis of childhood cancers, and support for the 
National Limb Loss Information Center to address the primary and 
secondary needs of children with cancer to prevent or minimize the 
disabling nature of these cancers. By authorizing the Secretary to 
carry out these functions, we will hopefully get the answers we need to 
ensure that all children live a healthy, cancer-free life.
  Another devastating disease which affects almost exclusively male 
children, is Duchenne Muscular Dystrophy, DMD. At this time, there is 
no cure for DMD. Little boys with DMD are most often not diagnosed 
before the age of two or three years. Most boys with DMD walk by 
themselves later than average, and then in an unusual manner. They may 
frequently fall, have difficulty rising from the ground, or difficulty 
going up steps. Calf muscles typically look over developed or 
excessively large, while other muscles are poorly developed. Use of a 
wheelchair may be occasional at age 9, but total dependence is normally 
established upon reaching the teen years. Most boys affected survive 
into their twenties, with relatively few surviving beyond 30 years of 
age.
  I have heard from the parents and grandparents of a little boy in 
Arkansas who has DMD. His name is Austin and his family is desperately 
hoping for a cure so they don't have to watch their son and grandson 
lose his ability to walk. While we are far from finding a cure for DMD, 
I am hopeful that language that Senator Frist has graciously worked 
with me to include in the children's health bill will help Austin and 
the thousands of other young boys suffering from DMD. Specifically, the 
Act authorizes the Secretary of Health and Human Services to expand and 
increase coordination of the activities by the National Institutes of 
Health with respect to research on muscular dystrophies, including DMD.
  In conclusion, we are about to pass incredibly important legislation 
to address a myriad of children's health issues, including childhood 
cancer and Duchenne Muscular Dystrophy. Efforts to improve the quality 
and length of life for millions of children are valuable beyond 
measure, and I encourage all of my colleagues to work together with me 
to raise awareness about these devastating diseases and the need to 
find treatments and cures for the children they affect.

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