Family Forced to Mexico for Child Cancer Treatment

From the Chronicle:

Parents of cancer patient try treatment in Mexico
By TODD ACKERMAN
Copyright 2000 Houston Chronicle Science Writer

A couple thwarted in their bid to have their son's cancer treated by controversial Houston doctor Stanislaw Burzynski have taken the boy to Tijuana for the alternative therapy tried by the Comets' Kim Perrot a year ago.

The family's plight has attracted national attention since six Republican presidential candidates, including Texas Gov. George W. Bush, called on the U.S. Food and Drug Administration in January to let the parents choose their child's treatment. A month later, a medical freedom-of-choice bill named for the boy was introduced in Congress.

"We've been driven from our country because the government won't allow us to select the doctor we believe is most capable of saving our son's life," said James Navarro, who testified before Congress last week on behalf of the bill. "It's left us disillusioned, embittered and angry. We're supposed to be living in a free country and it's all a facade."

Thomas Navarro, who turns 5 next month, has been receiving insulin-induced coma treatment for his brain tumor for the past seven weeks. Insulin-induced coma treatment is an experimental cancer therapy that previously had not been studied in humans or even animals, but appears to be showing promise at the Tijuana clinic. The clinic was one of three alternative venues Perrot, a 32-year-old basketball player diagnosed with lung cancer in 1999, visited in an unsuccessful and unorthodox attempt to beat the disease.

Downplaying the stigma Tijuana connotes to many people, James Navarro said he is so convinced the coma therapy is working that he would not discontinue it now even if Burzynski were suddenly allowed to treat Thomas. The FDA will not allow Thomas to be treated with antineoplastons, Burzynski's nontoxic experimental therapy, until he has first tried chemotherapy and radiation without success.

James Navarro said last week that the family will move to Houston after completing the coma treatment, citing support for their plight by Bush and Texas Commissioner of Health Dr. William "Reyn" Archer. The family left their Arizona home for a hotel in Texas in November after their doctor reported them to the state's Child Protective Services for refusing conventional treatment. Although Arizona CPS subsequently closed its investigation without action, Navarro says he is still concerned about harassment from doctors there.

Texas CPS also opened an investigation, prompted by a confidential complaint, and closed it without action.

Navarro's recent testimony before Congress was part of hearings held by Rep. Dan Burton, R-Ind., to build support for his medical freedom-of-choice bill, which would give parents ultimate authority in deciding whether to use drugs the FDA is investigating but has not approved. Under current law, the FDA makes that decision based on what it says is best for the patient.

The FDA believes the established regimen of chemotherapy and radiation is best for children with medulloblastoma, the particularly aggressive form of brain cancer Thomas has, because studies show it has a "cure rate" (meaning still alive five years later) of 50 percent to 70 percent, depending on age. The two most commonly cited studies show children fare better the older they are.

Thomas had surgery in September to remove his tumor, but his parents opted against follow-up chemotherapy and radiation when they learned that in young children they often cause not just the usual side effects of fatigue and nausea, but also hearing loss, spinal growth deficit, hypothyroidism and mental r****dation. Without any follow-up treatment, disease recurrence kills 90 percent of patients in one year and 100 percent in two years.

Republican presidential candidate and former U.S. ambassador Alan Keyes championed the family's situation at two debates and wrote a letter, signed by four other candidates, to Health and Human Services Secretary Donna Shalala asking her to reverse the FDA's position. Bush never got around to signing the letter before it was hand-delivered, but made public and private comments in support of the family. He had Archer arrange a meeting last fall between the Navarros and officials at the University of Texas-M.D. Anderson Cancer Center, from which the Navarros emerged still opposed to conventional treatment.

Thomas has had no symptoms since the surgery, but when two centimeter-size tumors reappeared a month ago, the Navarros took him to BioPulse, the Tijuana clinic pioneering the coma therapy. The therapy involves injecting patients with enough insulin to put them into a hypoglycemic sleep for 30 to 60 minutes, during which time cancer cells are starved of the blood sugar they feed on. Treatment is done five times a week, typically for at least two months.

Thomas' last MRI showed one of the tumors has shrunk slightly and the other has stopped growing, said BioPulse Director Loran Swensen, who acknowledged that the next MRI in a week will be more telling.

The procedure has been described by conventional medical experts as plausible but risky. Yet it was used as a treatment for mental illness from the 1930s to the early '60s before being superseded by electric shock therapy. In 1957, a New Jersey psychiatrist serendipitously found it improved the cancer of two mental patients, but the state stopped him from treating cancer patients with it, and it was not pursued as a treatment until BioPulse revived it last year. (Mexican law allows doctors to employ experimental therapies as long as there is informed consent by the patient.)

Perrot's experience with the coma therapy was undercut by the advanced nature of her cancer. Perrot underwent two coma treatments before unbearable pain caused her to leave to seek more conventional treatment in Tijuana. She died a month later.

Swensen said 23 of the 56 advanced cancer patients who have completed treatment this year are in remission or had their cancers significantly diminished. The other 33 did not improve and 11 of those have died.

"There's this arrogant American mentality that its treatment is superior to every other country's," Navarro said. "But the facilities here in Tijuana are superior to anything we knew in Arizona and comparable to what we saw in Houston. And most importantly, whereas doctors in the United States oppose anything that threatens their tradition, here they're open to new therapies that show the potential to save lives."

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As a long-time follower of alternative healing practices, I can say for a fact that, in many instances, doctors have cost their patients their lives because they are unwilling to explore possible alternatives or even compliments to their own way of thinking.

For a while now, a movement has been growing that suggests that the American Medical Association and the FDA discourage alternate treatments for cancer, AIDS and other serious diseases because those diseases are so lucrative. There is quite a lot of evidence to back it up as well.

The treatement center they discuss in the story was featured in a book by John Robbins (heir to the Baskin-Robins fortune who turned it all down when he realized the health detriments from dairy products) who is the author of several health books including Diet for a New America.

In the book, Robbins describes how the center was harrassed by FDA officials and the AMA even though they were having huge successes. In fact, much like Burzynski, none of the patients would testify against the clinic. Also, like Burzynski, the treatements are natural and don't involve drugs which brings into play the powerful pharmeceutical industry.

The man who ran this clinic (who is now deceased - he died just prior to his clinic being moved to Mexico) was eventually defended by the very district attorney who attempted to prosecute him. The reason: the DA's wife suffered from an in-operable form of terminal cancer. The DA took his wife to the clinic where treatment cured her. He quit his job as DA to represent the clinic full time.

Eventually, his head nurse moved the clinic to Mexico after his death to avoid the legal problems.

Burzynski has finally gotten FDA testing approval but only because he had the money and the powerful patients to back him up. The fact is that millions of people suffer needlessly because testing and approval of numerous treatments go ignored every year.

I'm not one to say that these are right for everyone. Some may benefit greatly from chemotherapy, radiation, surgery or any of the other conventional treatments used by oncologists. But, the fact remains that we'll never know unless we have the chance to try. I know if my life were threatened, I'd do just about anything to find a way to prolong my existence and everyone should be afforded that same opportunity.

It reminds me of the reporter (I think from the NY Times, but I can't remember) who covered health issues and got cancer. She entered traditional treatment therapy (chemo, radiation, etc), which she had advocated in her health columns and stories for several years, as a way to triumphantly prove her point.

She died. Shortly after her death, doctors said that they had succeeded in destroying the cancer but that she had died because her body was too weak to withstand the effects of the treatment. The doctors actually seemed happy in their pronouncement as if this was a vindication for their treatment because they were able to kill off the cancer. Unfortunately, they killed the patient also.

I hope that this little boy survives not just for the sake of his own life, but to bring attention to this problem and force the federal government and citizens to take notice of the issue.

You can actually get more info on stuff like this from the Physicians Committee for Responsible Medicine at http://www.pcrm.org/ - they are a non-profit organization made up of 5000 doctors (many of them, VERY well-respected from places like Johns Hopkins and Harvard Medical School) from all over the country who encourage a healthy lifestyle and advocate looking into health alternatives.

Thanks for letting me vent.

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DC: I appreciate your candor. One thing, however. The FDA and the AMA have no right to chose our treatment for us. None. It is up to us to make that determination for ourselves and our families.

And, as for survival rates rising, that actually is not true. Survival rates for all cancers have actually gone down since the 1970's when war was declared on cancer by the federal government. Operapable and treatable forms of cancer that have not spread have become more readily treatable, but more dangerous forms of cancer have actually become more deadly. In fact, the number of deaths in America in 1970 was 10% lower than it is today. That isn't exactly a success.

While I don't know the figures on that particular clinic in Mexico, I know that Burzynski has had a better than 85% cure rate. In fact, a large majority of his patients were people who had been given little or no hope of survival.

I am sorry to hear about your uncle. That is truely a tragedy, but the fact is that many treatments are not even given the opportunity to be tested while every day harmful chemicals and questionable pharmeceutical treatments are being passed through. All anyone is asking is that the government give equal treatment and equal time to all possibilities.

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Oh, and DC, you know how much respect I have for you and your opinions so I hope mine don't offend you.

We probably just have to agree to disagree on this one.

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