Why scientific medicine just can’t win in testimonials

Over the last month or so, I’ve written numerous posts about Daniel Hauser. Danny, as you recall, is the 13-year-old Minnesota boy who was diagnosed with Hodgkin’s lymphoma back in February, underwent one round of chemotherapy for it, and then decided that he wanted to pursue quackery instead of more chemotherapy. His mother supported his decision and justified it by appealing to a faux Native American religion known as Nemenhah, which is, in reality, nothing more than an excuse for its originator, a wannabe who named himself Chief Cloudpiler, to sell quackery under the guise of “Native American” medicine. Ultimately, his mother Colleen Hauser’s and his refusal to undergo chemotherapy led to child protective services reporting the family. Legal hearings ensued, and the judge ordered the Hausers to make sure that Daniel underwent appropriate therapy for his cancer. Unfortunately, Daniel’s mother took him on the lam from the law. Fortunately, they were only gone a couple of days before Colleen turned herself (and Danny) in to the law. When last we met Daniel, a friend was reporting that he had undergone chemotherapy and that his tumors were shrinking, a good sign.

Over the weekend, CNN weighed in, confirming that Daniel is indeed doing well. However, the story also happened to be one of the rare instances where I’ve seen in the mainstream press where a concept that I’ve emphasized since the very beginning of this blog was illustrated so well: Namely that, when an alt-med believer undergoes both standard, science-based therapy and an “alternative medicine,” he always attributes any improvement to the woo, not the standard therapy. Always. Unfortunately, the story was far too credulous and did not point this principle out. Just look at how the report begins:

(CNN) — A cancerous tumor in 13-year-old Danny Hauser’s chest has shrunk significantly since he was ordered by a court last month to resume chemotherapy treatment, a family spokesman said.

But the Hauser family attributes much of his progress to the complementary use of vitamins and minerals to boost his immune system, Dan Zwakman said.

“The family is doing it on their own, with the doctor’s knowledge,” Zwakman said. “Everybody is pleased that the tumor is shrinking, of course. The goal is to get rid of the cancer, but they’d rather be doing it without the chemo.”

In other words, Daniel is undergoing appropriate, science-based chemotherapy, which has a very high probability of curing his cancer. His tumor, as one would expect based on the known data regarding the efficacy of this approach against Hodgkin’s lymphoma, to Danny and his family the shrinkage of his tumors is not primarily due to the chemotherapy the judge ordered. Oh, no. It’s due to whatever woo he’s using to “boost his immune system” (whatever that means, given that it’s essentially a meaningless concept beloved of woo-meisters everywhere). Emanuella Grinberg, the reporter who wrote the story, then uses this introduction to discuss how the quackery clinics in Tijuana (which is where it was originally thought that Daniel and his mother were heading) continue to thrive by giving cancer patients a false hope of cure:

They eventually returned after an arrest warrant was issued for Colleen Hauser. But had they made it to their destination — the Rubio Clinic in Tijuana, according to Zwakman — they would have joined the ranks of an estimated hundreds of other cancer patients who head south of the border each year for cancer care.

The Rubio Clinic is also known as the American Metabolic Institute and is run by Dr. Geronimo Rubio, who is described thusly:

For the last 22 years, Dr. Rubio has researched and developed a process of RNA transference in lymphocytes, Dendritic Cells Vaccine, Primary Vaccines, Polypeptide Formulas for cancer cells and developed the formula for the blocking factors in tumor cells. His Immuno Vaccines developed from the patient’s own biochemistry are administered to the patient to re-educate the Immune System giving it access to the cancer cells 24 hours a day.

He is presently the Medical Director of American Metabolic Institute/Hospital San Martin, located in La Mesa, Mexico, where his special Immune Vaccines are combined with Rife Technology and Herbal Medicines.

Yes, indeed, immunology woo. Here’s a hint: Whenever you hear someone claim to develop vaccines from the patient’s own biochemistry that “reeducate the immune system,” be very skeptical. Of course, I know what’s going on right from the start when I see that he combines his immunowoo with Rife Technology, which is one of the purest of the pure as far as quackery goes. In any case, when it comes to woo, the AMI has it all, including darkfield microscopy, chelation therapy, DMSO therapy, growth hormone therapy, a 7-21 day tissue cleanse and dental amalgam removal, and, of course, a complete detoxification regimen. But that’s not all. It also offers homeopathy, applied kinesiology, chiropractic, craniosacral therapy, and digestive enzymes therapy, among many others. So what makes these clinics so compelling, given that what they offer is often rank quackery?

Here’s part of it:

Loose regulatory standards in Mexico allow Tijuana’s clinics to thrive, many offering expensive treatment in luxurious, spa-like settings, complete with fresh meals, exercise classes and emotional and spiritual counseling.

Many herbs and dietary supplements used in border clinics are not considered dangerous; they just have not been put through the rigorous clinical trials required for the U.S. Food and Drug Administration to approve them for use as cancer treatments.

Others, like the antioxidants carotene, lycopene and vitamins C, E and A, have produced inconsistent results in large-scale trials and are still being researched. Still others, like laetrile, a chemical compound whose active ingredient is cyanide, can be dangerous, the National Cancer Institute says.

But many patients say they are attracted by the warm, caring relationship between patient and clinic staff.

In other words, warm and fuzzy quackery all too often trumps effective scientific medicine when it comes to attracting patients. And, again, some of these clinics do offer therapies that range from being within the standard of care for scientific medicine to being sort of, kind of, maybe seemingly in the same ballpark as the standard of care, like this:

“They don’t just see the disease. They see the person behind the disease and know how to care for them in every way,” says Sarah Sackett-Hutcheson, who claims she has been cancer-free for 17 years.

When she was 11 years old, her oncologist told her family she had six months to live and recommended chemotherapy and radiation to battle her non-Hodgkin’s lymphoma.

Instead of undergoing the debilitating treatments, she went to the Oasis of Hope Hospital in Tijuana, where she received low doses of chemotherapy along with intravenous vitamins.

The American Cancer Society says there is no scientific evidence that low doses of chemotherapy or large doses of supplements are effective against cancer. But Sackett-Hutcheson believes the small doses of chemo attacked cancerous cells without destroying her immune system while the vitamins boosted her immunity.

“I remember thinking if they’d given me the high doses of chemo I wouldn’t have made it. Even the low doses made me so incredibly sick. I’d be getting up like every 15 minutes, puking in the middle of the night,” Sackett-Hutcheson said.

In other words, Sackett-Hutcheson got less than optimal chemotherapy, but not so low that it didn’t make her nauseated, and that was what almost certainly resulted in her surviving cancer-free for 17 years, not any of the vitamins or various other supplements that she was apparently given while undergoing the chemotherapy. If I were in a generous mood, I could speculate that this clinic had been visionary enough to figure out the concept of metronomic chemotherapy, in which low, frequent (or continuous) doses are used, eight years before it was first proposed and subjected to clinical trials. However, I find that highly unlikely. What is more likely is that Sackett-Hutcheson got a much larger dose than she thought she did, perhaps even something resembling standard chemotherapy. Whatever chemotherapy she underwent, it’s clear that it almost certainly wasn’t the woo that cured her. It was the chemotherapy. But to what does she attribute her survival?

The woo, of course.

At this point, it’s always tempting to point out that dead men (and women) don’t give testimonials. If Sackett-Hutcheson hadn’t been fortunate enough to survive, she ouldn’t be giving this testimonial now. The same thing is true of Jennifer Woods, who underwent the Alivizatos Treatment, which apparently involves a special diet and an intravenous “serum” concoction full of vitamins and minerals. CNN reports:

During her first monthlong visit, Woods paid about $15,000 for surgery to remove her tumors, 20 days of worth of the dosage and two meals a day, plus lodging expenses across the border in San Diego, California.

“I feel well. I’ve never had any ill side effects, and I have learned so much about nutrition and how to maintain my health,” she said in a telephone interview from her home in Denver, Colorado.

Woods says she has not seen a doctor in the United States since. She says she returns to IBC about every six months for six days at a time to receive “booster treatments” for about $1,200 a visit.

Righteous bucks for woo, wouldn’t you say? Once those Tijuana clinics hook someone, that person often remains hooked. Of course, for none of these three testimonials, Danny Hauser, Sarah Sackett-Hutcheson, and Jennifer Woods, does the Grinberg point out that the person giving the testimonial had had extensive conventional treatment; in Danny’s case, chemotherapy; in Sackett-Hutcheson’s case, nonstandard chemotherapy; and in Woods’ case major surgery, although in Woods’ case no mention was made of exactly hat kind of cancer she had. In all three of these cases, the patient credits not the chemotherapy or surgery, but rather the quackery, for saving their lives.

If you want to understand one reason why it’s so difficult to convince believers in alt-med that the woo being sold them, be it from a Tijuana clinic, someone like Dr. Rashid Buttar, or other purveyors of questionable therapies has no scientific or evidentiary basis to support it, look no further than this article. Patients, having undergone both chemotherapy or surgery and quackery, almost inevitably credit the quackery for their survival. True, as the article points out, not all Tijuana cancer clinic patients leave happy, but such patients are not the ones whose testimonials are trumpeted far and wide. They are not the people who are interviewed for articles like this. Often, they are dead, and dead people tell no testimonials.

I’ve often criticized the very concept of “integrative” medicine because I view it as “integrating” pseudoscience with science, quackery with real medicine. At best, adding the woo doesn’t help, and at worst it can actively interfere with therapy. Whatever the case, one danger of “intergrating” woo with real medicine is that, as the testimonials in tis article demonstrate, patients credit the woo, not science-based medicine.