Editor's Note: This column, which we hope to feature in every issue, is designed to spark discussion on the current hazards of health insurance, in particular the H.M.O. If you have had a difficult time with your insurance company or H.M.O. and want to talk about it, feel free to write or call us. We want to offer a forum for the hardships and frustrations, as well as offer advice on what we can do collectively to have an impact on these companies that control our health care. The following article appeared on March 15 in The New York Times. While the family was struggling with leukemia, and not CF, the underlying issues remain the same: the failure of the H.M.O. to consider anything beyond the profit margin. We appreciate your comments.
From the New England Journal of Medicine comes the story of a North Carolina family that was devastated by the inflexible and thoroughly inhuman decisions of a national health maintenance organization.
Inflexibility on an infant's care ruins a family.
A three-month-old girl was referred by the H.M.O. to a pediatric-oncology group at the University of North Carolina Hospitals in Chapel Hill.
(The H.M.O. was not identified in the article, which appeared in the February 22 issue of the journal. I am withholding its name at the request of the authors, Dr. Brent Weston, a staff physician, and Marie Lauria, a clinical social worker. H.M.O.'s have been known to retaliate against critics. A respected Cambridge physician, Dr. David Himmelstein, recently was fired "without cause" by U.S. HealthCare after he criticized certain managed-care practices on television and in print. He was reinstated after a public outcry.)
The three-month-old girl was diagnosed with leukemia. A bone marrow transplant, with her older sister as the donor, was recommended. The H.M.O. approved the transplant and asked for help in arranging a transfer of the baby to a hospital in another state that has been designated by the H.M.O. to do all bone marrow transplants in the region.
Dr. Weston and Ms. Lauria wrote that it soon "became clear that treatment out of state for several months would be detrimental to the family. Both parents were distraught. The father would not be able to be involved because of employment restrictions. The mother, who obviously needed to be with the infant, would lose her position and be forced to take a lesser job with a pay cut.
"The older sister, who was having serious behavioral problems, would have to be separated from her mother for a prolonged period. The expenses associated with an extended stay in a city where the family had no relatives or friends would be difficult for the family to arrange. There are two excellent transplantation centers nearby in our own state and we were asked to request that the H.M.O. make an exception to its policy on selecting a transplantation center."
They asked, but such humanitarian concerns are not what corporate care is about. In the competition with profits, patients must always lose. The H.M.O. said no. There would be no exception. The transplant would have to be done out-of-state.
Dr. Weston and Ms. Lauria were cautioned by their colleagues not to push the H.M.O. too far. A transplant specialist warned them against offending the carrier "because we are in the running for the next contract."
Others suggested, sympathetically, that they wise up to "the new medical- economic reality."
The H.M.O. complained about their interference with "the client-carrier relationship."
The entire experience was disorienting. The expanding universe of corporate care is a very strange environment for health professionals concerned primarily with the needs of their patients. The baby was taken out of state for the transplant and was not returned to the care of her physicians in North Carolina for six months. The older sister was sent to live with relatives in a different state. The mother was demoted. Compounding all other problems, the father lost his job.
Several weeks ago the baby suffered a relapse. When a second transplant was contemplated, the H.M.O., for reasons having nothing to do with the quality of care, recommended a different transplant center in yet another state.
Dr. Weston and Ms. Lauria were appalled. None of the factors that had made the first transplant such an enormous problem had changed. "In addition," they wrote, "the first transplantation center had established an ongoing relationship with the family." Now the family would have to start all over, at a different center in a different state.
This time, in order to keep the family together, the mother quit her job, gave up her H.M.O. coverage, and applied for Medicaid. "The parents have lost their home and their savings," write Dr. Weston and Ms. Lauria, "and the older sister has increasingly severe behavioral problems."
That, of course, is the family's problem. Corporate care is about the bottom line. There will be no exceptions.
Copyright (c) 1996 by The New York Times Company. Reprinted by permission.
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