When my friend Bob Kaufman (no relation) was diagnosed with pancreatic cancer in the early 1970s, there wasn't much oncologists could do to slow the progression of his disease. Yet even as his health rapidly deteriorated, he maintained a fighting spirit. He was determined to stay alive as long as possible.
This led him to make a desperate choice he knew was against his better judgment. But he had nothing to lose (except money he would probably never get to spend anyway). So he traveled to Mexico and went to a clinic that offered treatment with laetrile. He wasn't surprised when it didn't work; he died not long after he returned home.
Laetrile, extracted from apricot pits, continues to be promoted as a cancer cure to the unwary, despite a lack of scientific support or clinical-trial evidence. It is now sold as "vitamin B17" and under several other impressive-sounding aliases. Had shark cartilage been pitched as a treatment at the time, Bob would have tried that, too. And if he were here today, he'd likely be headed to a developing country as a stem cell tourist.
"The potential of stem cell therapy is not in dispute," Jose A. Bufill, MD, wrote in an ASH News Daily article on the recent annual meeting of the American Society of Hematology in Atlanta.
It is anticipated that cells will, in time, replace or renew dead or dysfunctional tissue in a wide variety of conditions. But before this promise is fulfilled, adherence to scientific method is necessary to prove safety and efficacy. Time and patience are needed.
However, Bufill acknowledges that those words are of no comfort to those who have a life-threatening illness.
They seek hope when none is offered, and they buy into the hype of untested approaches. Increasing numbers of patients are seeking and finding physicians willing to attempt novel stem cell therapies before they have been subjected to rigorous scientific scrutiny. Given the strict regulatory environment in some developed countries, clinics offering stem cell-derived interventions are sometimes located in developing countries with limited medical oversight.
These therapies are "often marketed direct-to-consumer via attractive websites," Bufill wrote. "An explanation of methods and risks is often vague or absent." Though most physicians adhere to the principles of "careful science," some on the fringes of medicine are willing to "reap financial benefit from the desperately ill."
The phenomenon of stem-cell tourism was addressed at the ASH meeting during a symposium titled "Overcoming Stem Cell-Tourism by Promoting Clinical Trials," jointly sponsored by the ASH and the European Hematology Association.
Douglas Sipp of the Riken Center for Development of Biology in Kobe, Japan, has been studying and documenting the situation since 2007. He described numerous stem-cell interventions that produced disastrous and far-ranging complications for patients. "In 2007, about 400 clinics offered treatment with unproven stem-cell treatment," Bufill wrote. "By August of 2012, one in five of them had shut down" because of financial insolvency or regulatory pressure. In some cases, the operators reopened their clinics in another country under a different name.
Alan Trounson, PhD, of the California Institute for Regenerative Medicine (CIRM) in San Francisco, discussed the potential for regenerative medicine interventions that pass muster in rigorous clinical trials. His institute is involved in initiatives investigating stem-cell interventions against diabetes, retinal degeneration, HIV infection, and blood disorders.
According to Bufill's article, the CIRM is spending $70 million "to develop 'alpha-stem cell clinics,' a concept intended to streamline a pipeline beginning with regulatory approvals... and ends in commercialization." Thus, the CIRM hopes to reap financial benefit from the desperately ill -- but at least by then we'll know the treatment really works.
If Bob Kaufman were here, he'd be the first to enroll in a clinical trial.
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