The HMO culture of death. (The Last Word).

Few human tragedies can compare to the death of a child. Perhaps the only greater one is a childhood blighted by a lingering terminal disease. And that agony is transmissible from the child to his parents. Take that unfathomable suffering, multiply it by three, and you will begin to understand the trials of the Bennett family of lone, California.

John and Alicia Bennett are the parents of three children suffering from Sanfilippo syndrome, a rare and invariably fatal genetic disorder in which a person is born without a crucial enzyme needed to break down chains of sugar molecules. The molecules accumulate, causing damage to vital organs. Those born with it can expect, at best, to reach the early teenage years. One of the exquisite joys of parenthood is to see an infant blossom into a social being, as the newborn begins to recognize voices, to speak, and to walk. Sanfilippo almost seems as if it were fiendishly designed to allow children and parents briefly to experience those joys, which are abruptly withdrawn as the disease remorselessly takes its toll.

When their first son Tommy was born in September 1999, John and Alicia noticed that their oldest child, Ciara, was "slower" than other children her age. Though Ciara started walking at 10 months, and was speaking at one year, the six-year-old no longer speaks, walks with great difficulty, and is prone to seizures and drooling. Her younger brothers have been diagnosed with Sanfilippo, but have yet to display serious symptoms. John and Alicia have learned of an experimental therapy that has been used on other Sanfilippo patients at Duke University -- but their insurer, Kaiser Permanente, has denied them coverage.

The treatment, pioneered by Duke University Pediatric Physician Joanne Kurtzberg, involves chemotherapy followed by transplants of stem cells taken from umbilical cord blood (a procedure that does not involve harvesting stem cells from human embryos).

Kaiser's decision, which was upheld by the California Department of Managed Care, was that the therapy is too risky to justify the expense -- $600,000 a child. But as Dr. Kurtzberg notes, other Health Maintenance Organizations (HMOs), such as Blue Cross/Blue Shield, have underwritten the treatment for Sanfilippo patients. She further points out that while the treatment is new, it has been used to treat about 600 patients each year.

Defending Kaiser's decision, medical ethicist Michael Shapiro told the Los Angeles Times, "If we are going to hold costs down, some people are not going to get treatment that might -- just might -- work, and some people are going to die." From this ...