[Congressional Record (Bound Edition), Volume 145 (1999), Part 14]
[Senate]
[Page 19867]
[From the U.S. Government Publishing Office, www.gpo.gov]



              ADVANCEMENT IN PEDIATRIC AUTISM RESEARCH ACT

  Mr. KENNEDY. Mr. President, I welcome the opportunity to join Senator 
Gorton and many other distinguished colleagues as a sponsor of the 
Advancement in Pediatric Autism Research Act. Autism is a heartbreaking 
disorder that strikes at the core of family relationships. We need to 
do all we can to understand the causes of autism in order to learn how 
to treat this tragic condition more effectively, and ultimately to 
prevent it. I want to commend Senator Gorton, the Cure Autism Now 
Foundation, and the many organizations and families in Massachusetts 
for their impressive leadership in dealing with this important cause of 
disability in children. In this age of such extraordinary progress on 
preventing, treating and curing so many other serious and debilitating 
illnesses, we cannot afford to miss this unique opportunity for 
progress against autism as well.
  Clearly, we can do more to provide support for children and families 
who face the tragedy of autism. At the same time, I am concerned about 
certain provisions in the proposed legislation which could 
inadvertently cause harm to children with autism and to our system of 
funding research.
  One provision allows use of NIH funds for health care and other 
services that ``will facilitate the participation'' in research. We 
must be clear that research dollars should be used only to cover costs 
that are required to carry out research. Insurance providers should 
never be able to use participation in research as an excuse to avoid 
paying for medically necessary health care. In addition, we must be 
especially careful to protect vulnerable children and families from 
situations in which financial incentives could affect decisions about 
participation in research.
  I am confident that we can work together to address such issues as 
the bill moves through Congress. I look forward to working with my 
colleagues, with the advocacy organizations and with familes to enact 
the best possible measure to bring hope to the lives of these very 
special children.

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