Tales from the Culture of Life

If George W. Bush and Samuel Alito have their way, a woman pregnant with a child who has severe birth defects will be unable to have an abortion, on the grounds that it's taking a life.

In George W. Bush's America, only HMOs have the power to take a life:

Somewhere in a corporate office at Health Net Inc. is someone who needs to meet Jack Zembsch. Jack is 4, he loves SpongeBob SquarePants, and he is going to die.

One doctor in the country just might be able to save Jack, but the nation's largest HMO won't let Jack see him because the doctor is not within its network.

Jack, who lives in Moraga with his parents, Mark and Kim Zembsch, has an extremely rare form of dwarfism called metatropic dysplasia, or MD. It leaves his bones extremely soft, and before long, they'll simply stop growing even as his body continues to get bigger. Eventually, his lungs will be so constricted by his ribs that breathing will become a chore, and an infection could kill him.

That is, if his spine doesn't simply snap from something as simple as a fall.

"There is literally only one metatropic kid born in this country each year," Mark Zembsch says. "Jack fits into the category of you-can't-believe-it rare.''

HMOs never want to hear about rare diseases. And the news that only Dr. William Mackenzie, the nation's acknowledged expert in MD, who works at the Alfred I. duPont Hospital for Children in Delaware, has any chance of saving Jack is unlikely to make them any happier.

"When you have to fly a patient out to the East Coast, it is the fundamental HMO no-no,'' says Jamie Court, a Santa Monica-based health care advocate and co-author of "Making a Killing,'' a book on the health care system. "It is the M.O. of health care providers to deny access to expensive treatments. They give you the runaround and hope you go away.''

We all know about that. If we haven't been through it, we know someone who has -- the automated telephone merry-go-round, the paperwork snowstorm, the mind-boggling protocols that must be followed to the letter. With weary resignation, we fight and complain and yell until -- grudgingly -- the insurance company pays up.

But, see, this is different. This is a 4-year-old boy. And if he can't have a series of difficult and touchy operations -- by the only doctor in the entire country with the expertise to perform them -- his spine will bend his body until it either crushes his lungs or snaps.

You see, George W. Bush's America is a culture of life -- until it costs a megacorporation money. At that point, life becomes very cheap indeed.