Jan 09 2007
Hope is a positive, and some might argue even necessary, human emotion, but false hope is its cruel and dark underbelly. No population is more in need of hope, and more vulnerable to false hope, than the desperately ill. Unfortunately we live in a world where false hope merchants prey upon the sick like sharks upon bleeding and thrashing fish.
There is just such a shark in China, one Dr. Hongyun Huang (not to be confused with disgraced Korean stem-cell researcher Hwang Woo Suk) who runs a clinic where he injects (or claims to inject) stem cells derived from olfactory sheath cells taken from aborted fetuses into the spines of those suffering from spinal cord injury or motor neuron disease. Dr. Huang claims (while simultaneous saying he promises nothing) that his treatment has resulted in miraculous cures of his patients. His clinic has lured the desperate from around the world, at a fee of $20,000 plus all associated expenses. He is abetted by a gushing and disgraceful press (such as in this Guardian article) who sensationalize his vision and courage, while cynically disparaging those skeptics in “western medicine.”
No doubt he is also aided by the fact that stem cells are the latest in sexy new fangled medical technology. Like many such new areas of technology, the promise of miracle cures seems limitless, but the technology has yet to catch up to the hype.
Dr. Huang’s clinic has all the red flags associated with quack clinics – optimized for money extraction from the desperate rather than actually helping people or extending medical knowledge. First, Dr. Huang has not disclosed to the scientific community what is in the cocktail he uses to culture the cells he extracts from fetuses. He has performed no tests on the cultures themselves to determine what cells are present, their viability, or their biological activity. There is no way to confirm that what he is injecting, therefore, is what he claims.
Dr. Huang has also failed to conduct even the most basic observational controls in assessing his treatments. There are no blinded before and after examinations, no objective tests of function, no imaging or other anatomical or physiological tests to see what is happening. Rather, he relies entirely on the uncontrolled subjective experience of his patients.
When confronted with this apparent lapse on his part, his response is absolutely typical – he states that he is simply too busy treating people and doesn’t have the time to do research. He also states that such research would be unethical because of the need to do sham surgery (expose patient’s spinal cords and then not inject his cocktail).
Of course, this is the opposite of the truth, in that it is unethical not to do appropriate research. His treatment might be worthless, or in fact harmful, and it is unethical to subject patients to a highly invasive procedure without adequate assurance of safety and effectiveness. He can also use controls that do not involve sham surgery, or at least make objective measurements of function to compare to historical controls. If, on the other hand, his treatment works, then he is robbing the world of its benefits by refusing to conduct proper observations. He is in an ethical lose-lose situation.
There are good reasons to suspect that his treatment is worthless. First, most patients who report improvement say that they had an improvement immediately after the surgery. Of course, this does not allow enough time for any kind of neurological regeneration to have occurred – but is perfect timing for a good old-fashioned placebo effect. When confronted with this “inconvenient truth” Dr. Huang simply responds (again, true to form), “I don’t know how it works.”
Also, reports of improvement are typical of placebo responses. One touted case of a young girl with a spinal cord injury indicates that she continues to need a respirator and a wheelchair, but she has a new tiny sensation in her right forearm, which gives her hope that the treatment will work.
Frustrated by the tide of patients Dr. Huang is turning into victims, some skeptical western physicians decided to at least do some basic before and after observations of patients who chose to receive the treatment. Dr. Dobkin and others found that in the 7 patients they observed, not one had any objective improvement with up to a year of follow up. Five patients had serious ill effects from the surgery, including three who developed meningitis.
The one bright spot in this dismal picture is that responsible patient advocacy groups (like the ALS Association and the Motor Neurone Disease Association) are generally warning patients away from Dr. Huang’s clinic. But such warnings tend to be drowned out by the din of credulous reporting and glowing anecdotes on the internet – with one common theme: that Dr. Huang is offering the one thing his patient’s most keenly desire – hope.
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