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...suburban housewife who spends much of her time thinking of creative ways to raise more than $100,000. The money she and her husband collect will go to their three-year-old daughter, Jorie, but not for her college education. Jorie suffers from tyrosinemia, a rare liver disease which obstructs her blood supply, lowers the level of her infection-fighting white blood cells, and leaves her susceptible to serious internal bleeding. Moreover, a 50 percent chance exists that her liver will become cancerous. According to her doctors. Jorie's only hope for survival is a liver transplant, an operation performed...

Author: By Richard J. Appel, | Title: Experimenting With Care | 10/12/1983 | See Source »

Jorie's family is only one of several in this country that continues to worry about raising funds for a child's liver transplant. The Wethingtons of Wauconda, Ill. have a 10-month-old son. Brett, who was born with biliary artresia, a condition which prevents his liver from functioning properly. Last July, in one of his weekly radio addresses, President Reagan asked the country to aid a Texas infant suffering from the same disease. Reagan hoped to locate a liver for young Ashley Bailey. But a lack of transplantable organs is only one of the problems that faces...

Author: By Richard J. Appel, | Title: Experimenting With Care | 10/12/1983 | See Source »

...National Institute of Health (NIH) deem a liver transplant an "experimental" rather than "therapeutic" operation. Those terms are akin to international classifications of trade status, like "friendly" or "most favored nation"--phrases whose superficial similarities camouflage their varied meanings. In this context, "experimental" offers little favor to children like Brett and Jorie, considered by their doctors especially good candidates for transplants. For neither private insurance companies--which generally quote federal standards to their clients--nor Meidcare or Medicaid will fund such operations...

Author: By Richard J. Appel, | Title: Experimenting With Care | 10/12/1983 | See Source »

ACTION TAKEN this past summer by an advisory committee to the NIH offers hope and signals a bureaucratic step in the right direction. The NIH gathered experts from around the world to discuss a possible reclassification of the liver transplant operation. Irv Shapiro, a spokesman for the panel, says that "after extensive review, we concluded that liver transplantation in therapeutic for certain liver diseases." The panel deemed untherapeutic transplants for those with alcohol or drug related liver diseases; those patients make poor candidates for transplants, the panel determined. But for children like Jorie and Brett, the panel concluded that...

Author: By Richard J. Appel, | Title: Experimenting With Care | 10/12/1983 | See Source »

...Thomas Strazl, who heads the liver transplant program at the University of Pittsburgh's Health Center, also believes the operation has moved beyond the experimental stages. Strazl has said the first year success rate for children stands at roughly 70 percent and that he thinks the operation "will be a widely used procedure and become competitive in numbers with kidneys in the next three or four years...

Author: By Richard J. Appel, | Title: Experimenting With Care | 10/12/1983 | See Source »

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