Policy & Culture: Bad Medicine?
By Dan Luzadder
HARLINGEN, Texas – In a small adobe complex of apartments and offices minutes north of the Mexican border, Fergus Kear, an Indiana attorney, sits in a vinyl chair in a clean, quiet room as an IV drips an unregulated, untested formula of herbal compounds into his veins.
Editor's Note: Fergus Kear died of cancer sometime in October.
He is in the advanced stages of melanoma, and his doctors at home have given him up for dead. Kear has forked over $10,000 to a Mexican clinic, which he found through a Web search, for treatments that are largely experimental. Open sores on his shoulder, side and stomach bear witness to a radical technique performed at the clinic in Reynosa, Mexico, not far away, in which aggressive tumors are injected with the same compound now being fed into his blood.
The substance – containing bloodroot, curare and other unidentified ingredients – has apparently killed several subcutaneous tumors. Dead tumor tissue protrudes through Kear’s skin in two places and is removed with a scalpel in a kitchen cluttered with medicine bottles and sterile dressings. Radiologists at the Reynosa clinic have concluded that a large tumor attached to his liver has shrunk by 90 percent, three weeks after injection. But tumors in his lungs, which cannot be injected, complicate his prognosis. There is no predicting his ultimate outcome, says the doctor who is treating him.
Such treatments – because they involve terminal illnesses like Kear’s have become the touchstone for a debate over a whole array of questionable business practices now easily and privately accessible on the Web. To a community of activists in the emerging field of alternative medicine, the Internet has thrown open access to a virtual underground of alternative medical care. Some of it is clearly illegal in the U.S., and much – but not all – is of questionable value. But advocates contend that the Web, if nothing else, is forcing the traditional medical community to consider clinical trials of treatments that have long been vilified as quackery.
“The Web has given new authority to the voice of the patient, and a new forum for the sharing of solutions that lack the advocacy of the giant corporations that steer modern medicine,” insists Henry Scammell, an author and a medical researcher with The Road Back Foundation, a Massachusetts organization that promotes research on connective-tissue diseases.
But federal and state regulators are faced with a conundrum: How do they protect consumers from e-commerce offerings that are, at best, of unproven value and, at worst, dangerous to those seeking them out? While criminal activity on the Internet is clearly enforceable, gray areas abound, and it is not always clear what is or is not legal or ethical. Attempts to strictly regulate content on the Net have produced outcries from free-speech advocates and public fear of government intrusions on privacy. Court challenges have accompanied almost all federal and state efforts to regulate the Web.
The debate, of course, goes far beyond health care. From privacy to pornography, from Internet gambling to auction of goods of questionable origin, the controversy over regulation has split cyberspace travelers into two camps: Those who would let all buyers beware, and others who think an unregulated Internet – where con artists and Good Samaritans can mingle freely – is a loaded shotgun aimed at the heart of commercial markets.
Some regulators say that the vast number of international Web sites, and the speed with which they can change their address, is an intimidating expansion of the marketplace and creates challenges that are more than difficult.
“Some folks at the FDA are really singing the blues about the Internet,” says a Food and Drug Administration official who asked to not be identified. “We certainly don’t want to do anything to let the bastards know we’re scared.”
The issue should concern I-managers and other business decision makers who are betting on e-commerce, since it has a bearing on how much people trust information on the Internet, says Rich Cleland, Federal Trade Commission senior attorney.
“When the Internet becomes an open game for every kind of fraud and huckster out there, from health fraud to lottery fraud to business opportunity fraud, then the whole Internet gets smeared with an unsavory reputation,” Cleland says. “We are still at that stage in Internet development where consumer confidence is critical, and these activities undermine consumer confidence.”
Kear, whose own Web searches for medical help turned up numerous potential treatment locations, was diagnosed in March 2001 with cancer and was told he had three to six months to live. He has beaten the odds so far, by a matter of days. Interviewed in Texas last month, he was tired, in pain and homesick, but alive and hopeful. He says other people treated there have shown some renewed strength and energy, at least conditionally. His own prognosis remains unclear.
“I haven’t regretted this decision,” he says. “Of course, what choice did I have?”
The 58-year-old attorney is one of thousands who migrate to the Texas-Mexico border each year seeking alternative therapies they have learned about on the Web for terminal cancer and other illnesses. Similar clinics abound in the Bahamas, Latin American, Argentina and elsewhere.
All the while, the American Medical Association, the FDA, the FTC, consumer protection advocates and prominent medical journals have consistently beaten warning drums about trusting Web sites whose promoters offer “unproven therapies.” Government regulators say they can only operate on good science – the kind that comes from the pharmaceutical industry, in which trials of new drugs and treatments can cost up to $500 million to complete.
“When you make public policy on anecdotal evidence, it can be very misleading,” says Cleland.
In 1997, the FTC and the FDA launched Operation Cure. All to crack down on health fraud on the Internet, and they have since shut down numerous Web sites for false claims of medical benefits from food supplements. The FDA, which has primary authority to regulate this area, has investigated and prosecuted individuals for selling substances like Laetrile, a drug derived from apricot pits, for cancer treatments in the U.S.
Operation Cure all this June announced that it was shutting down four Web sites the FTC says were making fraudulent health claims – and fining their operators. An agency press release said, “Quality, not quackery, is the focus of our new campaign. Our survey of . . . Web sites found that too many make deceptive and unproven, fraudulent claims. Miracle cures, once thought to be laughed out of existence, have found a new medium. Consumers now spend millions on unproven deceptively marketed products on the Web.”
But keeping those sites closed is another thing. One enforcement target shut down two years ago, ApricotsfromGod.com, is still online. After one of its operators was forced to close for selling Laetrile illegally from the basement of his New York home, the site no longer advertises Laetrile for sale, but carries information that advocates its use. An e-mail to the site from Interactive Week asking for information on how to purchase Laetrile received a response with a toll-free telephone number to call. An operator there assured the caller that Laetrile could be purchased by credit card and shipped immediately.
Some supporters of alternative medicine research admit that Web sites that make unsubstantiated claims about health remedies have polluted the discourse on the subject. Ralph Moss, a former public relations officer for Memorial Sloan-Kettering Cancer Center who now consults for the National Institutes of Health on alternative cancer treatments, has devoted himself to research on cancer and alternative care for 25 years. He wrote a book titled Alternative Medicine Online five years ago. At first, Moss says, he thought the Internet would make quality health information widely available.
“I thought, here was a new millennium, literally. And I thought it would make high-end information available to everyone, and it has in some ways,” he says.
But there has been an extremely negative downside, he says, that he didn’t anticipate. The Internet “has given birth to a lot of highly commercial treatments or claims that are untested,” Moss says. “I think we had moved to a higher level of discourse before the Internet hit, and now we are back in the era of quack-busters, cops and robbers . . . by those who are clearly opposed to anything alternative.”
He adds, “Some of the claims made are outrageous, and some of the impressions they leave are equally outrageous. The waters have been very muddied.”
The Internet, though, has also provided new opportunities for mainstream physicians and pharmaceutical providers to communicate with consumers in vast numbers, offering medical education, access to self-diagnosis and recommendations on treatments.
Keith Argenbright, a former family physician in Dallas, now works with other doctors through MyDoc-Online. He helped found the Internet company, a subsidiary of French pharmaceutical company Aventis, two years ago. The company offers enhanced communication between patients and their doctors through physician Web sites.
“I think the Internet will continue to take patient empowerment to an entirely new level,” Argenbright says.
But over the issues of cancer treatment, the debate goes beyond economics to moral issues that include the right of a patient to seek alternative care – whether that involves what the medical establishment would call “unproven therapies,” or meditation and prayer.
T.C. is the Texas homeopath and rancher who developed and refined the cancer-fighting herbal treatment being used by Fergus Kear. He agreed to allow Interactive Week access to his homeopathic facilities in south Texas on the condition that his identity not be revealed.
Originally, T.C. used the remedy to treat sick cattle, horses and other farm animals – an effort his father initiated. He says he saw it work, and eventually he turned it into pill and intravenous forms after cancer-stricken friends and acquaintances who learned of his work asked to try it on themselves. Those events prompted an investigation by Texas health officials and the FDA, and a long and costly effort to challenge regulators eventually forced him, he says, to go underground.
For Kear, and for tens of thousands like him who have few other choices, the alternatives on the Web offer hope. What is in doubt is whether they offer anything more than false hope, and whether health regulators can – or should – stop them from plying their trade.