Experimenting With Care

LISA HILL of Aurora, Ill, is a 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 at only five hospitals in the United States, including Massachusetts General and one at the University of Minnesota. "The Minnesota hospital won't even look at her until we get $100,000 in the bank," Lisa Hill says. "When you've got a terminal child, you don't want to have to worry about such extensive fundraising, too."

Just as no one can adequately explain the source of a parent's strength or perseverance, so no one can presume to gauge a parent's grief or fear when a child lies near death. Somehow, though, such a situation proves even more disturbing when a mother must compose a flyer that begins, "Please help this little girl live!!" The emphasis provided by the photograph of Jorie on that flyer--her wide, radiant smile stretches towards bright, clear eyes--makes the exclamation points seem almost unnecessary.

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 the families of such children.

"Doctors have told me that Brett's operation could cost anywhere from $80-$150,000, without complications," Leslie Wethington says. "With complications," she adds, "the costs could go up to $300,000." Ed Wethington is a United States Postal Service letter carrier in Palatine, Illinois. Hill's husband works as a recording engineer in Chicago. "Of course I worry about the money," Leslie Wethington continues. "But I know that Brett's going to have this operation no matter what."

The 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.

The argument exists that the government, let alone private insurance companies, cannot possibly afford to help all the patients who need assistance. And few would insist that Medicaid and Medicare cover experimental operations; the possible costs appear unlimited. In an ideal world, funds might exist to combat all illnesses even on an experimental basis. Only in the real world, though, do children contract terminal diseases which they can't even pronounce.

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 the operation "may prolong life."

Dr. 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."

Unfortunately, however, the NIH panel could offer only a recommendation to the Health Care Financing Agency, an arm of the Department of Health and Human Services. A department spokesman expects a final decision in a month or two. Perhaps during a future radio broadcast, Reagan could go one step further and announce his support for a decision that eventually may help Jorie and Brett. But more pressure is needed to convince that body to move in the right direction.

In the meantime, "The Jorie Hill Von Ohlen Liver Transplant Fund" at a Geneva, Ill, bank stands at $50,000. "The Brett Wethington Fund" has collected $40,000, from town rummage and bake sales, hair-cut-a-thons, pet shows, pancake breakfasts and anonymous donors. Fortunately, according to their mothers, Brett's disease has not yet progressed too far, and Jorie remains in stable condition. She is among the top five on a waiting list at the University of Pittsburgh. Unlike the Minnesota hospital, Pittsburgh's Health Center has told Hill that, when the time comes, only medical and not financial considerations will be taken into account.

So Lisa Hill's fundraising experiment might last long after her daughter's eventual operation. And Wauconda, a town of roughly 6000 citizens, continues to pool its resources for Brett. Even a nursing home there conducted a "Rock for Brett" rocking chair marathon. Yet there are numerous other children around the country who also need help--children who may not live in towns like Wauconda or Geneva, or whose parents may be too distraught or too busy to engage in elaborate fundraising. For parents--and especially for their terminally ill children--certain experiments might be therapeutic as well.