Several people have asked my advice on this topic. For obvious reasons, patients can be very eager to try an exciting, new medication or other treatment for their illness. I am a big fan of treatment research for brain diseases. However, this eagerness has also been exploited for … well, forever, to sell snake oil and otherwise take advantage of patients who are desperate for a cure.
Advice I have given over the years includes:
- Make sure you have been seen at least once by a doctor who is qualified, experienced and comfortable treating your illness.
- Make sure you are connected to reliable information, such as from the National Institutes of Health. Other good sources can include respectable patient support organizations such as the American Parkinson Disease Association (APDA) and the Tourette Association of America, and well-vetted community news sources such as HD Buzz (for Huntington disease).
- There are a number of proven treatments for the symptoms of movement disorders. For Parkinson disease (PD), for instance, these treatments are successful enough that nowadays people with PD do not have a shorter lifespan than people without it, on average. Your physician can discuss pros and cons of the available treatment options.
- For many illnesses, including Tourette syndrome and Parkinson disease, patients often notice fluctuations in symptom severity over the course of a day and even over the course of many months. This point is important because temporary improvement of a moderate degree may be due to a treatment but could also be just the expected fluctuations in symptoms over time.
- The primary reason anyone should join a research treatment study is to benefit the larger community by finding out something about a new treatment option.
Recently, Dr. Michael Okun, a well-known movement disorders neurologist, gave great advice on this topic. His comments were about stem cell therapy for Parkinson disease, but the advice works for almost any area of research. He was concerned especially about “stem cell tourism or ‘stem cells for cash,'” as opposed to what he called “legitimate” stem cell research. He wrote:
“We recommend never paying for an unproven experimental treatment. We also recommend that before saying yes to anyone approaching you with ‘cash for a [new] treatment,’ that you should request copies of two critical documents: 1- the Institutional Review Board (IRB) approval to conduct research on you as a human subject, and 2- the informed consent form for research. Bring the documents to your doctor and healthcare team for discussion and shared decision-making.” Do not ever be rushed or pressured into this decision.
Good advice for patients with any serious illness.