One decade ago last month, six-year-old Thomas Navarro died of respiratory failure after a two-year bout with cancer. Before his death, Thomas and his family endured an excruciating confrontation with the American regulatory system—a clash that garnered national media attention and became an issue in the 2000 Republican presidential primary. Today, the Navarro story is largely forgotten, but it deserves revisiting on this anniversary.

Thomas was diagnosed in September 1999 with medulloblastoma, a virulent form of brain cancer that can travel through spinal fluid and metastasize in other parts of the body. His parents, Jim and Donna, were told that he needed surgery to remove the current tumor, followed by an aggressive regimen of chemotherapy and radiation, if he were to have any chance of surviving the disease for long. His parents agreed and, two days later, doctors removed a golf-ball-size tumor from the base of his brain.

But then the Navarros learned more about the side effects of the prescribed treatment, including the likelihood of brain damage and growth abnormalities. They began researching alternative treatments with less harmful side effects. Ultimately, they became interested in an experimental treatment called antineoplaston therapy that tries to use peptides to starve the cancer cells. The creator of the treatment, a Polish-born, Houston-based physician and biochemist, had published studies showing promise for patients with brain cancers. Unfortunately, a few independent studies that tried to replicate his results did not find evidence of a therapeutic effect and the treatment was classified as unproven by the National Cancer Institute.

For some observers, the Navarros’ pursuit of alternative treatments seemed foolish. "When you're the parents, you're so vested you can't see the whole picture," Dr. Dianne Murphy, associate director for pediatrics at the FDA's Center for Drug Evaluation and Research, told People Magazine in a March 2000 article on the Navarros’ plight. Murphy placed Thomas’s odds of surviving the disease for five years at 70 percent if he followed the standard treatment, and she claimed the side effects were acceptable: "At the worst, a 10- to 20-point loss in IQ. This is a child who has much hope."

The Navarros saw matters differently. “"You see these little kids with portable IV trees, no hair, veins sticking up all over their heads; ashen gray, dark, lifeless eyes," James Navarro said of the standard treatment. "I said, 'Donna, it isn't helping these kids, it's killing them.' "

The Navarros moved to Houston, hoping to enroll Thomas in antineoplaston therapy. But the FDA warned the physician not to administer it to Thomas lest the FDA ban the doctor from giving it to other patients in trials.

Ultimately, the Navarros were compelled by threat of child endangerment charges to consent to the standard treatment. Thomas didn’t respond to the mix of radiation and chemotherapy. Declared terminally ill in April 2001 and given two weeks to live, he was allowed to try antineoplaston therapy. That treatment also failed and Thomas died that November. According to his death certificate, one of the factors in his death was “chronic toxicity of chemotherapy.”

Since then, research into antineoplaston therapy has continued. The NCI still classifies the treatment as unproven and independent testing remains inconclusive. However, the Houston clinic continues to report promising results and has even launched a Phase III trial on using the therapy against optic pathway glioma. All other current clinical trials of antineoplastons, however, are Phase II. (Phase II trials search for statistical evidence that an experimental treatment is effective; Phase III trials attempt to determine if the experimental treatment is more effective than the standard treatment.)

On the political front, Rep. Dan Burton (R, Ind.) introduced legislation to help people in the Navarros’ situation. The bill would allow patients to pursue alternative treatments if they are fully informed of the risks and the availability of a standard treatment. The bill went nowhere.

I probably wouldn’t make the same choice for my (hypothetical) child that the Navarros did; and, to me, antineoplaston therapy seems highly questionable. Yet, I side with the Navarros. Given the tradeoff they faced—a 70 percent chance that Thomas would survive for five years in exchange for probable brain damage and growth abnormalities—how could they be faulted for wanting to pursue a different course of treatment, even if that treatment was unproven? This wasn’t a case of parents denying their child safe, certain, life-giving medical care; it was a case of parents having to choose between different, highly imperfect alternatives.

Unfortunately, health care—and life in general—often require such decisions.

Having to make such decisions is lousy. But having options gives the chooser an opportunity to apply his values and (hopefully) find a choice that better comports to his preferences. That choice makes the situation more tolerable, though perhaps by just a tiny bit.

Not surprisingly, one person’s choice may differ from another. The Navarros’ treatment choice differed from the (conveniently hypothetical) choice of Dr. Murphy. The virtue of limited government and a liberal society is that they give people considerable freedom to follow their values in difficult situations like these. Unfortunately, the Navarros discovered that they do not live in a liberal society with a limited government.