St. Elsewhere

The NYTimes features a story on its front page that demonstrates the perils of health care reform. The root problem is not out-of-control costs, or cost-benefit analysis, or whether the gov't should be a single-payer for all health care benefits in the US. The real danger lies in the fact that Americans simply won't put up with the rationing and wait lists that true reform would entail, and with which Canadians and Europeans must deal. Months to Live: Fighting for a Last Chance at Life

As Lou Gehrig’s disease sapped Joshua Thompson of his ability to move and speak last fall, he consistently summoned one question from within the prison of his own body. “Iplex,” he asked, in a whisper that pierced his mother’s heart. “When?”

Iplex had never been tested in people with amyotrophic lateral sclerosis, the formal name for the fatal disease that had struck Joshua, 34, in late 2006. Developed for different condition and banished from the market by a patent dispute, it was not for sale to the public anywhere in the world.

But Kathy Thompson had vowed to get it for her son. On the Internet, she had found enthusiastic reviews from A.L.S. patients who had finagled a prescription for Iplex when it was available, along with speculation by leading researchers as to why it might slow the progressive paralysis that marks the disease. And for months, as she begged and bullied biotechnology companies, members of Congress, Italian doctors and federal drug regulators, she answered Joshua the same way:

“Soon,” she said. “Soon.”

People don't buy health care like they buy a car or a house. They are making a huge emotional and financial investment in a war not just against disease; but also fate, nature, and, ultimately, death. If their child, spouse, or parent is desperately ill, they will pay thousands of $$, and move heaven and earth to find even fleeting relief.

In the Thompsons' case, they are not seeking a miracle cure for ALS; they just want to alleviate Joshua's suffering and give him a bit of comfort in his last days (and theirs'. based on experiences in my family, I would say that family members who cling to the "miracle" cure - Iplex will save us! - are doing so as a coping mechanism for themselves, as much as for their sick loved one). Hollywood and the newspapers love the story of the family that seeks out and finds the miracle cure in the face of indifference from doctors, the FDA, Big Pharma, and other faceless evils. Does anyone honestly expect things will get better if health care reform ends with the feds paying for the nation's health care?

If anything, the Thompson's story shows that American health care could benefit from more freedom of choice, not less. Joshua is an adult. He understands the risks of Iplex. He wants to take it. His wife wants him to take it. His mother wants him to take it. Have everybody sign a waiver and let him take it! I understand why the FDA is very deliberate in testing and approving drugs, but that's so people can go to Wagreens without worrying that their Tylenol is going to kill them. When you have consenting adults seeking out relief, such concerns are really irrelevant.