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Stem Cell Therapy. Some Truth — Lots of Snake Oil

Posted Dec 03 2012 8:24pm

We’ve heard that stem cells can cure nearly anything from multiple sclerosis to cancer to heart disease and can even clear the mist from the minds of Alzheimer’s sufferers.   The sad truth is that at the moment stem cells, whether adult or embryonic cure nothing.  Stem cells in the form of bone marrow have long been used in the treatment of blood diseases, and the cells are also used to help burn victims and Multiple Sclerosis patients … but cure?  Not yet.  Sorry.

The promise of cures by stem cell therapy is common and cruel.

Many stem cell therapy practitioners and proponents appear to be legitimate authorities in the field as their names are festooned with impressive titles followed by a serpentine line of vowels and consonants that supposedly designate every possible expert credential.  Unfortunately 99.9% of what you see and hear is snake oil a term that gained prominence in the 19th century when hucksters sold Asian versions of the cure-all to unsuspecting citizens. Then, the claims were less sophisticated but so were the diseases.

The snake oil of the 1800s would cure everything from warts to a lousy love life.  Today the same claims are made but with more scientific terminology.  In the end, though, it’s still snake oil.  A recent segment on CBS “60 Minutes” exposed a scam that preyed on patients stricken with Amyotrophic lateral Sclerosis ALS) also known as “Lou Gehrig’s Disease.”  The program showed just how ruthless and heartless these scam artists can be http://tinyurl.com/ct2gw5t. You can follow that link or click on any of those below for the CBS report and additional information.

Full Segment: 21st Century Snake Oil Part 1
Full Segment: 21st Century Snake Oil Part 2
Web Extra: The Promise of Stem Cell Treatment
Web Extra: A Warning About Stem Cell Fraud

If you have ALS or know someone who does and need a resource for more information this one is highly recommended by many.  http://www.alsuntangled.com/index.html

Confused about what and who to believe on the stem cell therapy issue?  We’ve sorted through a lot of information in writing this blog and are confident that the sources we provide will answer your questions but there are a lot of links so either highlight them or write them down.

One highly respected resource on Stem Cell Scams is the website run by Doug Sipp the man you just saw in the 60 Minutes piece.  Sipp is the researcher from the RIKEN Center for Developmental Biology in Japan and is an outspoken critic of stem cell quackery. http://www.sctmonitor.blogspot.com/

Sipp also says, “Some clinics recruit patients in the United States and then send them overseas for treatment: the Stem Cell Treatment Institute in San Diego, for example, treats its patients in Mexico. Others invoke a ‘compassionate use’ exemption to FDA regulations, which allows them to charge patients for experimental therapies if no other treatment options are available. Some argue that the FDA has no jurisdiction over their activities, claiming that adult stem cells are not drugs — merely the patient’s own tissue — and therefore not subject to FDA oversight.”  Sipp goes on to say, “The growth in the number of clinics and companies marketing stem-cell products without approval is explosive.  The United States is becoming one of the most rapidly expanding markets for unregulated stem-cell applications.”

 “Stem Cells for Dummies”

(A book I bought for this blog and highly recommend)

“Researchers are sketching out all kinds of possible uses for stem cells on the drawing boards, and some of these potential uses are in or preparing to enter clinical trials — experiments to see whether these treatments really work in people. So far, though, the only proven stem cell therapies are for burns and blood disorders; everything else is experimental or theoretical, at least for the moment (no matter what you may read in ads or marketing brochures). http://www.dummies.com/how-to/content/stem-cells-for-dummies-cheat-sheet.html

The fact is that stem cells do hold great promise but there is a grand canyonesque gap between promise and reality.  Much of the promise revolves around the quest to have our damaged organs gain the ability to regenerate themselves and there is genuine evidence that it can be done.  Organ regeneration is all around us.  The Salamander can literally lose its tail in a fight knowing it will grow back again.  A crayfish is constructed in a manner that allows for joints to break so it can easily lose a claw which its body will soon replace. The same regenerative process exists in Newts, Starfish, Earthworms and tadpoles.  While human regeneration is far less developed we, too, have a limited ability to regenerate.

We may not think about it as “Regeneration” but that’s exactly what happens when you cut your fingernails or suffer a skin laceration.  The fingernails grow back and the skin heals.  The human organ most commonly associated with regenerative qualities is the liver but there is only minimal understanding of why it, among all of our organs, has that ability.  Why not the heart, the kidneys, lungs and pancreas, too?

All of this points to one singularly important fact.  We cannot sufficiently address the “how” to cure or treat until we more completely understand the “Why” of the underlying disease.  In a Time Magazine story, the Director of UCLA’s Institute for Stem Cell Biology Owen White said, “Biology is more complicated than splitting the atom because we (stem cell researchers) have to figure out how to create the outcomes we are seeking and how to measure the results simultaneously.”

There is sufficient evidence of the healing power of stem cells to be very optimistic.  The promise ranges from significant to mind boggling.  It has already been demonstrated that some types of stem cells can generate a plentitude of other kinds of cells so that researchers envision a day when patients with heart disease will be able to grow a new valve, maybe even an entire heart.  Should that promise become reality the entire donation/transplantation system would be tossed on its ear.

If we could regenerate our own organs, there would be no need for organ donors or transplant surgery.  Anti-rejection drugs would be totally unnecessary because the body only rejects material foreign to it.  A regenerated heart would be the same genetic and cellular makeup and therefore our immune system would ignore it.  Not only would such a development change the practice of medicine, it should also reduce the cost of maintaining our health.

The successful regeneration of organs as a routine therapy could totally eliminate the financial burden caused by transplant surgery, follow up visits, ant-rejection drugs (which can range up to $1 million in the first year of a transplant) and immunosuppressant side effects. An entire field of highly specialized medical practice would be greatly diminished if not eliminated.  Now one could be a cynic and say that the cost of regeneration would likely just replace what is lost by transplant surgery but I like to think or at least hope that our society won’t let that happen.

But…back to reality, all of the promise mentioned here is just that, promise. Until there hard clinical, peer reviewed evidence most of the claims made by stem cell clinics must be viewed as quackery, regardless of the credentials of the therapists or the testimony of patients.

All too often the public is taken in by one or two or more people who will testify that their lives are better, their illness disappeared or at least the symptoms were relieved.  Individual cases while compelling rarely if ever stand up to rigidly designed long term, peer reviewed scientific studies.

The International Society for Stem Cell Research (ISSCR)  http://tinyurl.com/cwffqh8 is a leading authority on this issue and in a piece titled, “The Top Ten Things to Know About Stem Cell Treatments.”  Here’s what they have to say about patient testimonials.

“There are three main reasons why a person might feel better that are unrelated to the actual stem cell treatment: The ‘placebo effect’, accompanying treatments, and natural fluctuations of the disease or condition.

1)    The intense desire or belief that a treatment will work can cause a person to feel like it has and to even experience positive physical changes, such as improved movement or less pain. This phenomenon is called the placebo effect. Even having a positive conversation with a doctor can cause a person to feel improvement.

2)    Likewise, other techniques offered along with stem cell treatment—such as changes to diet, relaxation, physical therapy, medication, etc.—may make a person feel better in a way that is unrelated to the stem cells

3)    Also, the severity of symptoms of many conditions can change over time, resulting in either temporary improvement or decline, which can complicate the interpretation of the effectiveness of treatments. These factors are so widespread that without testing in a controlled clinical study, where a group that receives a treatment is carefully compared against a group that does not receive this treatment, it is very difficult to determine the real effect of any therapy.

“Be wary of clinics that measure or advertise their results primarily through patient testimonials.”

“Hey, I’m dying, what have I got to lose?”

The question is legitimate and so is the response until one scrutinizes the situation.  Most of the stem cell therapies that offer cures or even relief are very expensive and while offered in the U.S. are often delivered in other countries.  You could spend all of your money on a treatment that doesn’t work and be unable to afford further care when you really need it.  Consider, too, that If travel is involved there could be additional problems like finding yourself broke, sick, alone and a long way from family and friends.  And, finally, participating in an unproven treatment may make you ineligible to participate in potential and promising clinical trials.

A Summary From the ISSCR.

“Stem cell science is extraordinarily promising. There have been great advances in treating diseases and conditions of the blood system using blood-forming stem cells, and these show us just how powerful stem cell therapies can be. Scientists all over the world are researching ways to harness stem cells and use them to learn more about, to diagnose, and to treat various diseases and conditions. Every day scientists are working on new ways to shape and control different types of stem cells in ways that are bringing us closer to developing new treatments. Many potential treatments are currently being tested in animal models and some have already been brought to clinical trials. In February 2010 the British company ReNeuron announced it had been approved to conduct a Phase I clinical trial of a neural stem cell treatment for stroke. The first embryonic stem cell-based treatment for acute spinal cord injury has been authorized by the U.S. Food and Drug Administration (FDA) to move into Phase I clinical trials. Although it is sometimes hard to see, stem cell science is moving forward. We are tremendously optimistic that stem cell therapies will someday be available to treat a wide range of human diseases and conditions.”

Obviously this blog was not written by a medical expert, although I quoted many of them.  I wrote it from the perspective of a transplant recipient, a patient, a former journalist and as the founder of Organ Transplant Initiative and Bob’s Newheart to attempt to shed a little light on a complex and controversial subject.  I purposely avoided getting  into any of the science of Stem Cell research or therapy because, frankly, I don’t understand it well enough to write about it accurately.

We promised resources and there are many.  Stem Cells for Dummies offers enough to keep you busy for weeks.  I will just list a few more aside from the usual suspects like the American Heart Association, the Diabetes Association, Kidney Foundation and others. .

If you are looking for news organizations that offer more than lip service to stem cell research and developments look to the following.  I use them regularly and much if not most of the information I post on Organ Transplant Initiative comes from these sites.

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.


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