Jonathan Hancock of Sterling is 13 years old, and he will die unless he has a liver transplant. He was born with a congenital defect in which his liver fails to produce the alpha 1 antitrypsin enzyme. The deficiency was diagnosed when he was an infant but he had no recurrence of trouble until his liver suddenly started to fail during the Memorial Day weekend. His doctors say a successful transplant will cure him. His insurance company says it won't pay.
Jonathan's story is not just one of a child's family needing to raise $200,000 for so-called experimental surgery that a private insurance company won't cover. Jonathan's insurance company will cover the cost of the same procedure for biliary atresia, another congenital birth defect. His doctors say that there is a record of successful transplants in people with Jonathan's enzyme deficiency. The technology is there to save his life -- to allow a child to fulfill his future. Thus, Jonathan's story is also one in which technology, morals and ethics -- the saving of a human life -- have collided with health insurance costs-and, so far, the bean counters are winning.
His mother, Hazel Hancock, says that her son came to her on May 31 and said he had noticed that the left side of his middle torso was swollen. Hancock, a nurse, took her son to Dr. Robert Comunale, for whom she works, and who is the family's physician. He was aware of Jonathan's history, and ordered tests that showed a severely enlarged spleen.
Dr. James Cooper, chairman of the department of medicine at Fairfax Hospital and its head gastroenterologist, admitted him to the hospital. Jonathan was diagnosed as suffering from severe liver failure caused by the enzyme deficiency. Cooper sent Jonathan to Children's Hospital in Pittsburgh, one of the nation's leading liver transplant centers, and he was accepted as a patient. "He is on the donor's list now, but they said their hands are tied unless the finances are there," says Hancock. Last week, she and her husband received a letter from Physicians Care, saying the company would not cover the transplant.
Physicians Care, based in Arlington, is an 18-month-old health maintenance organization set up by local physicians, according to its president, John Valiante. The HMO covers about 10,000 people who are insured through employer group policies, which makes it a fairly small company. Like many such companies, it has a reinsurance policy with a larger company in order to protect itself against excess losses. The reinsurer is State Mutual Life, based in Massachusetts. Valiante says State Mutual Life also refused to cover the procedure.
Valiante, who wrote the letter denying coverage to the Hancock family, says he feels very concerned. "It's something as a father of two children I don't like to see happen, but it's part of what is a covered benefit and not a covered benefit." He did not know why the procedure could be covered for one congenital defect and not the other, but he said the plan, like many others, "has evolved in response to what employers want." He said his company is trying to help the Hancocks raise money privately. The Knights of Columbus is running a fund-raising campaign.
The ethical and moral question is whether that should be at all necessary. Jonathan is critically ill now. "We see his condition worsening every day," says his mother. "We do not know how much time we have." If a donor is found, he has to be in Pittsburgh within four hours. Time isn't one of his covered benefits.
"Without a liver transplant he will die," says Cooper. "A successful liver transplant in his case will basically cure his problem. On that basis it is clearly indicated. It is no longer an experimental therapy. It's an accepted mode of treatment. He needs it and it needs to be done."
Comunale says that liver failure with this enzyme deficiency is sometimes brought on by the stress of going through puberty. He doesn't have any trouble figuring out what the insurance companies ought to do. "Where you have a condition which is curable by transplantation and you have a young child or a young adult, the ethics, the morality of the situation, demand that you deal with it and not put the technology out of reach of that person." He said that "a number of the procedures that are now commonplace were initially called experimental by insurance companies and by government agencies and that it was because of the continued use of them that they became commonplace. You have a procedure in place that will correct one problem and will also correct another. It is immoral not to pursue it."