Heal thyself.com

As wired patients go online for medical help, the question is: Can a little knowledge be a dangerous thing?


Arthur Allen
April 13, 1999 11:39PM (UTC)

Autism might be the perfect disease for the computer age -- a mysterious
disorder characterized by the obsessive ordering of things and the profound
inability to relate to people. Bill Gates is a bit autistic, the parents of
autistics say, half joking -- but the disease is not a joke. To be the parent
of an autistic is to be in love with a child who may not be able to speak
or heed your voice, who may bang his head on the floor until it bleeds if
you disturb the arcane geometry of his toy soldiers. Doctors don't
understand autism and can't cure it. But the parents of autistics are a
disproportionately wired bunch, and they grasp for threads -- of which there
are many on the Web. Every few years, a new miracle cure comes down the
pike, then bombs out. The latest hope, or hype, is something called
secretin, a hormone derived from pig intestines whose therapeutic workings
are as mysterious as autism itself.

Victoria Beck, a New Hampshire housewife with a background in the
mail-order business, stumbled onto the substance when she took her autistic
son to a clinic in April 1996 to have problems in his digestive tract
checked out. The FDA approved secretin two decades ago as a diagnostic tool
for gastrointestinal problems -- it's dripped into the vein to test
pancreatic function. But 3-year-old Parker Beck got an entirely different
benefit from it. Young Parker, who had communicated mostly by grunting,
began to speak several days after he got his first secretin infusion, and
his autism symptoms have steadily improved since then, says his mother.
Other doctors reported similarly encouraging responses, and the news began
to flash through the autism lists like wildfire. By March, an estimated
2,500 autistic children had been infused with secretin.

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Nutritional and medical crazes are timeless. But the secretin
phenomenon highlights something new: the Internet-driven research priority.
In the 1970s, the word-of-mouth spread of laetrile, a bogus cancer remedy
made from apricot pits, led thousands of people to squander their lives and
fortunes in the hazy clinics of Tijuana. Today, there's a new laetrile
practically every week, and an entire wing of the NIH is being funded to
study "nutroceuticals," alternative medical treatments marketed as
nutritional supplements to evade FDA scrutiny -- saw palmetto (for enlarged
prostates) and ginkgo (for memory repair) being two recent examples. "We
researchers are backing and filling," says Dr. Richard C. Shelton, a
Vanderbilt University psychiatry professor who is leading a multi-center
study of St. Johnswort, the herbal depression cure. "We've got patients
on these treatments -- we need to know, do they work or not? Our studies are
consumer-driven, and it's the ready availability of information on the
Internet that is putting them into consumers' hands."

In November, the NIH authorized five trials around the country for
secretin. The FDA, under pressure from Congress, nudged a Silver Spring,
Md., researcher named Edward Purich to include autistic patients in
accelerated trials of a synthetic secretin compound that Purich had
developed purely as a diagnostic tool. While many seasoned autism
researchers shook their heads in disbelief, the federal authorities
maintained -- credibly -- that they had no choice. Desperate parents are paying
up to $15,000 a vial for the dwindling supplies of pig secretin. Some have
mortgaged their houses, or taken their kids to those same Tijuana clinics
or wherever else there was a doc who claimed to have a dose of secretin.

"Having been in the field for 25 years, I know that every three to four
years, people come up with a cure for autism that isn't a cure," says Dr.
Marie Bristol-Power, who's in charge of autism research at the NIH. But "right now there are literally thousands of people who've been infused
with this drug," she says. "If this is promising we want to follow up. On the other hand, if it doesn't stand up in clinical trials, we want to get
that information out, because people are exposing themselves to danger."

In other words, determined individuals have harnessed the Internet to turn
the traditional pyramid of the American medical establishment on its head.
Of course, research priorities are often politically influenced. But in the
case of secretin, the agenda has been set almost single-handedly by Bernard
Rimland, who heads an autism institute in San Diego. In the 1960s, Rimland
challenged the "refrigerator mother" theory of Bruno Bettelheim, who
argued that autism was a psychiatric disorder caused by unloving mothers. A
gadfly who was not an M.D., Rimland eventually prevailed. By now, thanks in
part to the concentrated punch of patients linked by the Internet, Rimland
has become a gadfly with muscle. He has data banks and patient lists and can
use them to set research agendas. Rimland is feared by specialists, who
admire his advocacy work but also point out that secretin is not the first
unproven therapy or theory he has pushed. In addition, while no one is questioning
their dedication to finding a cure, both Beck and Rimland have a vested interest
in secretin. The two jointly filed a patent for the
use of secretin in autism, and when readers click secretin on the Web site
of Rimland's institute, they get an order form for Beck's book, "Unlocking
the Secrets of Secretin."

For the pathologically skeptical -- to borrow Rimland's phrase for his
secretin critics -- it is tempting to see secretin as emblematic of
Internet-facilitated snake oil, of which there is no shortage. On Nov. 10,
the FTC led a consortium of consumer protection groups around the world in
a surf for quacks -- and found 1,200 sites offering bogus elixirs, herbal
remedies and crankish mechanical devices to the desperate and gullible.
According to a recent Louis Harris poll, something in the neighborhood of
60 million Americans have gone on the Web to get health information. At a
time when managed care gives doctors little time for patients in the flesh,
plenty of online docs are dispensing free advice in the disembodied privacy
of the chat room. Which is terrific when the advice is good and frightening when the advice is biased, poorly informed or part of somebody's plan to make a quick buck or push an agenda.

A recent example is the growing rebellion of servicemen and women leery of
the anthrax vaccine. This movement is a chimera of anti-government sentiment
and homeopathic gibberish, germinated in virtual rooms where metaphysical
nurses from Santa Rosa, Calif., consult with Marines convinced that President Clinton is
poking them with anthrax for sport. The anti-vaccinationists are claiming that experimental anthrax vaccines caused Gulf War illness. This is the kind of medical claim that is almost impossible to confirm. Congress has held some hearings on the subject; more are scheduled for later this month. For better and for
worse, "the Internet is empowering patients with information," says
Victoria Beck, who, coincidentally, believes a measles-mumps-rubella
vaccine triggered her son's autism. "Through the Internet you meet up with
other parents who have the same story and you feel a certain strength in
numbers."

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That is precisely what disturbs traditional doctors. "An epidemic of
misinformation," bemoans the British Medical Journal; "not too little
information but too much, vast chunks of it incomplete, misleading or
inaccurate," complains the Journal of the American Medical Association. Tom Ferguson, an expert on online health
experts who lectures frequently to medical doctors, finds them worried by the
speculative material their patients dredge up on the Web. But of course
that's the paternalistic view, and it's partly a defensive one. "A primary
care doctor has to keep up with 700 to 800 conditions," says Ferguson, who
edits the Newsletter of Consumer Health Informatics and Online Health.
"You the patient need to find out about only one. And if you know what
you're doing, you can spend 25 or 30 hours online and become as
knowledgeable about that one condition as your doctor."

Spend enough time talking to people with chronic or rare conditions and you
realize that however strange the Web, it's often the only place for them to
go. And the front-line physicians who deal with this population learn to
live with the Web as an unbidden consultant. "I see it as a blessing from
God," says Dr. Yuval Shafrir, a pediatric neurologist at Georgetown
University. "Sometimes I see a patient with a very rare disease, a disease
that in a textbook has maybe three lines written about it. But you go on
the Internet and some mother in California has a support group and Web
page."

When the secretin wave swept in, it literally swamped Shafrir, causing his
e-mail box at Georgetown to overflow with mail and leading the system
administrator to cut off his account. The speculation was that secretin
somehow bound itself to brain receptors the way Prozac and other
anti-depressants do. Shafrir was skeptical -- but sympathetic to parents who
wanted to try it. "Living with an autistic child is one of the most
difficult challenges anybody can face in life," he says. He has infused
about 15 children with secretin. Only two seemed to get better, but the
others "at least can be satisfied that they tried."

"My best guess is that when the dust settles, the percentage of patients
who improve will be well over 70 percent," says Rimland. The extent to which
his anecdotes of secretin success will turn out to be placebo effect will
be known when the first double-blind clinical trials are completed later
this spring. There is as yet no science to secretin. But then again, nobody
knows how aspirin works.

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"I think it's sad that everybody's so desperate that they'll inject this
completely unknown substance into their children right away," says Eric
London, a New Jersey psychiatrist who in 1994 founded a group, the National
Association for Autism Research, that in some ways rivals Rimland's. "I
wouldn't put it in my kid." (London has an autistic 12-year-old). But
Rimland scoffs at his critics -- "I pity them," he says. And he issues a
challenge: "Physicians are increasingly being compelled to do their
homework if they want to avoid being embarrassed by not knowing
up-to-the-minute information provided by their Internet-savvy patients."
Who will ultimately be the most embarrassed by secretin, of course, remains
to be seen. But it won't be the last cure to arise on the Internet.


Arthur Allen

Arthur Allen writes on health, science and other issues for Salon. He lives in Washington.

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