SAN DIEGO — My story about a potential stem cell therapy for Parkinson's patients got an interesting comment that deserves some discussion.
Reader SammyJo Wilkinson, who has multiple sclerosis, points out that the therapy envisioned by Summit4StemCell won't be ready for some time, and patients with advanced stages of diseases need better treatments now. They can't afford to wait. I am including her full comment later in this blog post.
Wilkinson is a model of an activist patient. She has diligently triedexperimental therapies for MS. And she's pursuing authorized treatment with "adult" stem cells.
Wilkinson wonders why the researchers in my article are not investigating adult stem cell therapy for Parkinson's. The short answer is that the Parkinson's therapy envisioned requires production of dopamine-producing neurons. In some sense, the approach is an extension of earlier experiments using neurons from aborted fetuses. Using induced pluripotent stem cells, which can be derived from skin cells, is the least invasive way of generating these neurons.
Of course, that doesn't rule out using adult stem cells for Parkinson's. From the patients' point of view, you want to have several competing approaches, to increase the odds at least one of them will work. And in many diseases, the options are growing. We have a plethora of clinical trials in this country, so many that it's hard to keep up with them.
Patients looking for new treatments should familiarize themselves withclinicaltrials.gov. There, they can search for a clinical trial for their particular disease. This is a database maintained by the National Institutes of Health that lists all approved clinical trials, whether they are accepting new patients, criteria for acceptance, etc.
Keep your eyes open
Some patients are sufficiently desperate to resort to unapproved procedures, either here or in other countries. I certainly understand that patients with no other options might rationally try an unapproved therapy. But even these patients should take the time to weigh the potential harm such therapies could cause. While hoping for the best, patients need to plan for the worst. The great majority of approved clinical trials fail, so the odds are going to be even worse for unapproved treatments.
I wouldn't presume to tell patients what treatment they should take or reject, since I'm a reporter, not a doctor. Patients should extensively read both the pros and cons of their treatment options until they can recite them in their sleep. The Internet makes it easy to find divergent points of view and weigh their relative merits. Just be aware that much of what you read is going to be false or misleading, and it's your job to sort out the facts, probabilities, possibilities and lies.
Stem cell researcher Paul Knoepfler is compiling a list of reasons why patients should not try unapproved stem cell therapies. I recommend his list for patients to read carefully before making a decision to try such unapproved therapies. If they have soberly considered the list of dangers -- and some are indeed chilling -- then these patients are truly in a position to give informed consent to such unauthorized treatment.