ShareThisSACRAMENTO, Calif. - Last September, Vanessa Alvarez had what she thought was a sinus headache she couldn't shake. Then her vision went blurry in one eye.
Within days, the young Elk Grove, Calif., woman was nearly blind from a condition that put pressure on her optic nerve. She and her mother began a quest familiar to anyone who has ever heard the dark slam of the word "incurable."
How to go from zero to expert? How to tell the difference between bold research and brazen scams? Should they go to China? Could stem cells help?
Bogus cures are nearly as old as human disease, but they have found especially fertile ground in stem cell medicine -- new, complex and perhaps dazzlingly promising in the long run.
At the University of California, Davis Institute for Regenerative Cures, "we're averaging two calls a day from desperate patients," said Director Jan Nolte.
Meanwhile, the Obama administration is appealing a controversial ruling by a federal judge that temporarily barred federal funding of embryonic stem cell research. U.S. District Judge Royce Lamberth concluded that federally funded stem cell research violated the will of Congress, which prohibited research in which a human embryo is destroyed.
While the stem cell battle continues in court, Nolte tells people losing their sight or struggling with arthritis that stem cells can do nothing for them right now. Not in America, and not anywhere else.
She warns anyone who asks, "If a clinic is asking you to pay a lot of money, just really think carefully about what are their motives."
Those who do legitimate research have become increasingly worried about unregulated or even fraudulent clinics.
In July, a journal for kidney specialists described unusual masses that grew in the kidney of a woman given stem cell injections in Thailand. The injections did not lessen her disease, and her kidney had to be removed after it developed tangled growths of bone marrow stem cells and blood cells.
"The world is full of clinics and pseudo practitioners who would offer 'treatments' for conditions that cannot be treated," said Larry Goldstein, director of the UC San Diego Stem Cell Program and a board member of the International Society for Stem Cell Research.
"We are now starting to see reports of people coming back in worse shape than they went," Goldstein said.
The international stem cell group created a website in June that offers tips on how to spot a dubious medical facility, and gives detailed advice on what questions people should ask.
Among the red flags, Goldstein said, are clinics that demand payment for experimental treatments; clinics that don't publish their results in scholarly journals; clinics that claim the same program can treat widely varied diseases; and clinics that claim things rarely or never go wrong.
The society's website is also taking names of clinics around the world that the public would like it to evaluate, and later this year it will begin posting information on how well patient safety is regulated at each of them.
"Everybody loves to believe in the maverick in the wilderness," said Goldstein, who is the author of "Stem Cells for Dummies." "It's a wonderful myth. It happens sometimes, but it's just not that common."
With stem cells right now, he said, "other than some diseases of the blood, some diseases of the skin and one or two others, there really is nothing else proven to work to a reasonable degree of certainty."
In California, one researcher became so dismayed about reports of inappropriate treatments that she has offered to analyze, for free, samples of any stem cells that a prospective patient sends her.
Jeanne Loring, who directs the Center for Regenerative Medicine at the Scripps Research Institute, has had no takers so far, but she encourages anyone interested to e-mail her at jloring(at)scripps.edu.
She and other scientists stressed, though, that no one should assume a treatment or clinical trial is dangerous simply because it is offered outside the United States.
When Vanessa Alvarez's sight dwindled to a thick gray fog, she and her mother, Jessica Figueroa, hadn't heard about the International Society for Stem Cell Research, which has offered a patient handbook since 2008.
Instead, Figueroa, a telephone company project manager, gradually developed her own set of guidelines as she began researching possible treatments on the Internet and elsewhere for her daughter.
"I remember hearing stem cells may be the end-all, may be the answer," Figueroa said. She found videos of people talking about how their children's vision problems were being treated with stem cells in China, but she could never track down long-term results for those people.
Figueroa asked her daughter's doctor about what she had seen, and she recalls him saying, "Please, please do not be fooled. ... Please don't go there. Please don't spend $50,000."
The family was told that although there may be some limited improvement, there is currently no way to repair the nerve damage that Alvarez, now 27, has suffered.
Gradually, as Figueroa learned more about optic nerve damage, she jettisoned "cure" from her list of Internet search words and replaced it with "research."
And she developed two rules of thumb: Put the most trust in websites that end in .edu or .gov. And ask her daughter's doctor, who specializes in conditions like Alvarez's, about anything that sounds promising.
(Contact reporter Carrie Peyton Dahlberg at cpeytondahlberg(at)sacbee.com.)
(Distributed by Scripps Howard News Service, www.scrippsnews.com.)
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