Is Irv being replaced?

barbara

Pioneer Founding member
Jeannine sent me the link to this article. It is the usual ho hum snake oil piece put out by the media. Upon taking a close look however, one thing is different. Irv is not the quoted one. I found that to be very interesting. Maybe, too much has been unearthed about Irv or maybe he was just too busy researching to add his two cents. Either way, the article uses the same old story about the kidney and never bothers to enlighten the reader of any successful therapies.


http://www.sacbee.com/2010/08/08/2944514/beware-stem-cell-cures-doctors.html

Beware stem cell 'cures,' doctors say

By Carrie Peyton Dahlberg
cpeytondahlberg@sacbee.com Sunday, Aug. 8, 2010

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 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 UC Davis Institute for Regenerative Cures, "we're averaging two calls a day from desperate patients," said Director Jan Nolte. On their own behalf, she said, the callers are usually stoic. When they're calling for a child or spouse, they sometimes cry.

"It breaks my heart," Nolte said.

All too often, Nolte must tell those with cancer, those losing their sight, those struggling with disabling 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@scripps.edu.

Loring was featured in a video made by the California Institute for Regenerative Medicine last year, warning about "stem cell tourism."

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.

First-rate stem cell research is going on in parts of Europe, in Japan, and even in China, where those doing strong science end up tarred by shoddy operators in their own country, Loring said.

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 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.

Both are pretty good guidelines, said Goldstein, the San Diego researcher.

? Copyright The Sacramento Bee. All rights reserved.
 

Kaye

New member
Dr. Goldstein

Barbara,
Here's you a quote for Dr. Goldstein. Looks like he has been in the "research saddle" for a long time, author of Stem Cells for Dummies, interested in "new therapies and new methods for drug discovery" a.k.a big Pharma. When are they planning on treating any disease or any patient and at what cost? Are we just supposed to die while they research until the research dollars run out? Other large medical schools have made significantly more progress towards treating patients using adult stem cells. When is the public going to wake up?

"This myth of a miracle cure is particularly dangerous because a cottage industry of clinics has sprouted abroad that deliver so-called stem cell therapy for any disease?at a steep price. ?In most of those cases, there is no strong proof or evidence that these things really work,? Goldstein said. ?It's almost as bad as faith healing.?

Goldstein has been on the UC San Diego faculty since 1993. The true promise of stem cells is that, in the future, as research progresses, new therapies and new methods for drug discovery will indeed emerge, Goldstein said. ?Remember that research means inquiring about, learning about things that we don't know yet,? he said. ?And so we don't know what we'll find in many cases, and there will be disappointments, as well as exciting breakthroughs.? That?s where the metaphor of a new continent ready to explore comes in.

Exploration, of course, comes with a price tag. The Obama administration is trying to help where it can, Goldstein said. But federal funding for medical research has failed to keep up with inflation in the past decade. ?If you look at the magnitude of the problems we're trying to solve and you look at the size of our investment in solving these problems, we're way under-invested,? the UCSD researcher said. ?What that means is that many good opportunities that might lead to breakthroughs are not being followed up.?

Meanwhile, in California, the promise of stem cell research is backed by solid funding, namely the $3 billion from Prop. 71, a ballot initiative voters approved in 2004. Two years ago, the governing board of the California Institute for Regenerative Medicine, which is in charge of doling out Prop. 71 money, granted $43 million to the San Diego Consortium for Regenerative Medicine to build a center dedicated to stem cell research on the Torrey Pines Mesa. The consortium includes UC San Diego, the Burnham Institute for Medical Research, the Salk Institute for Biological Studies and The Scripps Research Institute.

An official groundbreaking for the facility, which is being built on UCSD land across from the Salk Institute for Biological Studies on North Torrey Pines Road, took place March 26. Officials said it is set to open within the next 18 months. The space will allow scientists from many disciplines to come together and come up with creative solutions to some of the problems stem cell researchers face, Goldstein said. It will also attract more investigators and more companies to the area, turning San Diego into a bigger stem cell research hub, Goldstein predicted. UC San Diego is a wonderful setting to conduct this kind of interdisciplinary research, he added.
 
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