23 Sep 2009

Stem cell, hard sell

It's medical science's greatest breakthrough. But before embarking on an expensive form of stem-cell treatment, weigh up the evidence for the claims.
By Prof Michael S. Pepper.

Every human being possesses some degree of emotional vulnerability, and even the most steely can be made to cede if pressed hard enough.

Imagine then how easy it is to persuade someone who is severely disabled or chronically ill to undergo a mystical, revolutionary form of treatment that will alleviate all suffering, return a life of productivity and excitement, and remove many years of hardship from the individual, the family and even society.

In what follows, I have transcribed a real-life scenario that I am faced with on a weekly basis on the telephone.

"Hello, this is Dr Pepper speaking."

"Good day Dr Pepper, this is Lucy Smith. Could I have a minute of your time please?"

"Yes, of course. How may I help?"

"I am phoning in connection with my sister, Mabel. Mabel has diabetes and, about a year ago, had a kidney transplant that has been very successful. However, her eyesight has been deteriorating quite severely over the past year and she is desperately trying to find a way to stop this, or even get back her normal vision."

"I am very sorry to hear about your sister. How may I be of assistance?"

"Well, you see Doctor, our mother passed away recently, and Mabel and I have come into a bit of money as part of our inheritance. We have been looking on the internet and have discovered a clinic in Germany that offers stem cell therapy for blindness."

"Yes, I have seen some of these websites, but most make claims that are anecdotal and, for the most part, scientifically unsubstantiated."

"Well, this is the reason I am phoning you Doctor. You see, they are asking for the equivalent of about R150,000 for a stem cell treatment for Mabel's blindness and this doesn’t include travel to and from Europe or accommodation. Mabel wrote to them recently."

"This is what Mabel wrote: 'Dear Sir, I need to know a few things. The treatment for impaired vision, how long does it take to notice any improvement and, after the treatment, is there any follow up? Do you have any feedback from other patients that have undergone this treatment?'"

"This is the response: 'Dear Mabel, the success of this treatment may appear in a few weeks, but we usually say that two months is the minimum needed to be sure the treatment has been a clear success. We will contact you afterwards asking you to fill in a follow-up form. We will publish our results of eye treatment in the near future, but they will be related to macular degeneration and other, more sight-specific problems, than those related to diabetes.'"

View the benefits in context
I hope to have succeeded in painting a typical scenario in which a patient with a chronic illness is lured into a world of hope and expectation, thanks to the ease with which information can be transmitted over the internet.

If you are asking yourself, "Why is he making such a fuss about this? Surely if this sort of treatment is available for anyone, anywhere on the planet, it must be acceptable from an ethical and regulatory standpoint. And anyway, I can’t see anything wrong with the response of the German Clinic above", then please read on.

First, there is unquestionable benefit to be derived from so-called stem cell therapy, but this must be viewed in the context of:
(a) current and universally accepted forms of treatment that are part of the routine practice of medicine; and
(b) treatments that are not currently part of routine medical practice but that are part of the so-called "future promise" of stem-cell treatments.

The excitement generated over the latter is the result, mainly, of the promising results that have been obtained from experimental (pre-clinical) studies and some early clinical trials with stem cells.

Bone-marrow transplantation, which is a procedure done mainly for cancer, for example leukaemia, lymphoma and myeloma, but also for some blood disorders and inherited diseases, is the only universally accepted form of stem-cell therapy that is part of routine medical practice. Stem cells also contribute to the success of certain procedures used to assist healing of bone and skin, and some of these have been practised for a long time.

Several clinical trials have looked at the effect of stem cells on healing a dysfunctional, "broken" heart (heart attacks, heart failure) and, although the early clinical trial data in humans has been encouraging, this is not yet in the realm of routinely practiced medicine.

Much has been written about the role of stem cells in treating/curing diabetes (including blindness) and diseases/disorders of the nervous system such as spinal cord injury, Parkinson's disease and Alzheimers disease.

Current reality vs. future promise
However, to make the quantum leap over the chasm that separates "current reality" from the "future promise" of stem cells, simply allows us to fall directly into the waiting arms of those people who undermine our integrity and exploit our emotional vulnerability. It has always surprised me that governments and statutory bodies in the countries in which these questionable procedures are performed appear to be unable to put a stop to them.

With regard to the clinic's response to Mabel, it is a real shame that those who purport to getting great results with this form of therapy add oil to the fire of our vulnerability by suggesting that what will work for one disease (macular degeneration in Dr X's letter) will also work for another. Has it ever occurred to you that, as medical students, we were taught a whole new vocabulary of medical terms and that, when we feel insecure, we spout forth in medicalese to impress our patients?

This is precisely what happened to Mabel. Dr X not only failed to answer her question about blindness and diabetes, but also sent her into a make-believe orbit of fancy, important words in order to create confusion in a medically ignorant person, who would naturally succumb to the brilliance of her learned doctor.

The message I am trying to convey is the following: before you embark on an expensive form of treatment in the hope of "getting back to normal", weigh up the evidence for the claims that your future healers make with a critical and unemotional mind and, above all, consult your healthcare professionals for their opinions.

(This article originally appeared in Rolling Inspiration, September/October 2009, and is the first in a series of articles written by Professor Michael S. Pepper of the University of Pretoria. Copyright: the content remains the property of the author and may not be reproduced in any format without his express and written consent.)