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“Hope can have a powerful but fleeting effect on our symptoms” said my friend Barb Rosenthal. We were discussing how phony cures for Parkinson’s disease are dangled before us. It is pretty easy to find hype about Parkinson’s cures associated with herbal supplements, stem cell treatments, PD tests, and other remedies.

Unfortunately, products advertised as cures for Parkinson’s disease are fake. At this time, there is no cure for Parkinson’s.

In addition to fake cures, bogus treatments proliferate the world of medical scams. Consumers need to be very careful about signing up for dangerous procedures even though they may sound like trailblazers that are hot in the world of biosciences. It is important to research and cross check all medical decisions.

“I’m concerned about particular claims I’ve seen for some stem cell treatments” notes Sarah Eitzman, a pediatrician with Parkinson’s. “I’ve seen claims that profess to help with quite a disparate variety of diseases without any real data. One study was from an open access journal with a small number of patients reporting non-motor symptom improvement (sleep, mood…etc). It describes fetal cell infusions given by IV and injected into the abdominal subcutaneous tissue.

“Some promising legitimate studies on stem cell transplants on PD patients involve cultivating stem cells so that they become dopamine producing neurons, and then injecting them into the area of the brain where those cells have died. The challenges in this kind of therapy (based on prior research) include very wide-ranging results, with some patients having improvement of motor symptoms to some having worsening dyskinesia. Stem cell therapy clinics that have no regulatory oversight and offer IV or subcutaneous infusions are not offering this type of stem cell transplant.”

To stay safe, make sure your treatment is FDA approved. The US Food and Drug Administration (FDA) ensures the safety of drugs and medical devices. FDA approval means that the FDA has decided the benefits of the approved item outweigh the potential risks for the item’s planned use. Ask your health care provider to confirm this information.  Ask for this information before getting treatment.

Contrary to urban myth that medications are approved more quickly in Europe, some research shows the FDA is actually faster than the FDA’s European Union counterpart.

According to FDA guidelines for the consumer, (these are for stem cells therapies but they are applicable for all treatments) if you’re considering treatment in the United States:

Request the facts and ask questions if you don’t understand. To participate in a clinical trial that requires an IND application, you must sign a consent form that explains the experimental procedure. The consent form also identifies the Institutional Review Board (IRB) that assures the protection of the rights and welfare of human subjects. Make sure you understand the entire process and known risks before you sign. You also can ask the study sponsor for the clinical investigator’s brochure, which includes a short description of the product and information about its safety and effectiveness.

If you’re considering treatment in another country:

Learn about regulations that cover products in that country.

Know that the FDA does not have oversight of treatments done in other countries. 

Be cautious. If you’re in a country that may not require regulatory review of clinical studies, it may be hard to know if the experimental treatment is reasonably safe.

The adage Hope springs eternal is particularly true for people with Parkinson’s. By guarding our safety we can protect our hope for the future.

 

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