Earlier this week, the world was treated to the shocking news that three women between the ages of 70 and 90 had been left blind by an unproven stem cell treatment in the United States. The three women, who were all suffering from age-related macular degeneration, lost their eyesight barely two days after they underwent the aforementioned procedure. “It had been unlikely that they would get back their good eyesight before the proceedings, but the treatment made it worse,” said Dr. Thomas Albini, the ophthalmologist from the University of Miami who oversaw the women’s welfare after the unproven treatment.
The women had probably made a mistake any of us would have given their set of circumstances. Who would not take a chance at a clinical trial if they were losing their sight and a clinic offered them the perfect solution to their predicament? I think everyone would give it a thought, if only in passing. Nevertheless, the tragedy of these three women has a few things to teach each one of us about such stem cell clinical trials.
What do you need to do before you decide to join a stem cell clinical trial?
The answer to this question is simple: research. ‘Research what?’ one may ask, and here are a few pointers to get you started.
For one thing, your research should begin with your doctor. If you have a condition that you think can be treated through a stem clinical trial, confirm with your doctor. If it turns out that yes, your condition can be managed by such a procedure, ask the doctor for a recommendation: he or she is more likely to know the legit trials suitable for your condition.
After getting a recommendation, it is time to roll up your sleeves and begin earnest individual research. First of all, look up the clinic- ensure it exists. You can then search for the clinic in the federal database ‘ClinicalTrials.gov’ to ensure it is a registered treatment center.
Learning from the case of the three women, it is clear that making sure the clinic is registered is not enough. Go a step further. This was the advice Dr. Albini gave to prospective study participants,”You should get written documentation that a study has been registered with the Food and Drug Administration before you agree to join it. Furthermore, it would be prudent of you to make sure you are being treated by a licensed physician with training and experience in treating the disease that ails you, even without stem cells.”
For the more cautious would-be participants, there is a lesson to be learned from Gene Emery, who writes for Reuters. He said that something should have ringed false with the women seeing as how their trial was not administered by an eye specialist nor was the study affiliated with any academic institution. So next time you look up a study, remember to only consider one with an expert in your respective area of treatment within a recognized institution.
Parting shot, also from Emery, “Patients never pay to be included in a major research study.” Remember that as you undertake your next stem cell clinical trial treatment research.
