Considering a stem cell transplant for Parkinson's? What you need to know

Imagine if there was a cure for your Parkinson's disease? This would impact a lot of people as Parkinson’s is the second most common neurodegenerative disorder after Alzheimer's disease. It is both disabling and therapeutically challenging. Sign me up, right? Not so fast. Stem cells are not a cure for Parkinson’s disease; though there are many clinics and other facilities who will administer stem cells for cash— with the promise of a cure. In this week’s blog we explain stem cell tourism and help folks with the important questions to ask to stay safe.

What are stem cells and what would inspire people to

believe they may cure a disease like Parkinson’s?

Sometimes I find it difficult to explain stem cells to patients and family members. One simple explanation that resonates is comparing the stem cell to child development. Early in development, parents can influence the child to differentiate into one area of life or another and develop a skill set for success in adulthood. Stem cells are a potentially self-renewing resource that can be influenced by scientists (like parents) to differentiate into a needed tissue (Okun, 2015).

Now close your eyes and imagine this scenario. You travel to a far away clinic and upon arrival they describe these amazing cells— drop them into the brain and cure Parkinson’s. They use catch phrases like “self renewing.” They tell you, we can make dopamine cells and give them back to you. Sign me up right? Not so fast.

Where do these stem cell tourism clinics get the

stem cells from?

The short answer to this question is there are many potential sources of stem cells and many of these clinics use similar techniques as research laboratories.

HTTPS://MOVEMENTDISORDERS.ONLINELIBRARY.WILEY.COM/DOI/10.1002/MDS.28187 FROM A RECENT COMMENT BY JANKOVIC, KORDOWER AND OKUN IN MOVEMENT DISORDERS

Previously, most research efforts were geared toward the harvesting of stem cells from discarded human embryos. This type of stem cell harvesting has drawn the most controversy, mainly from religions with deep-seated beliefs that obtaining the cells in this manner is unethical. Recently, however, neurogenesis has been proven to occur in the adult human brain. Neurogenesis, or the formation of new cells from existing adult human brain tissue, has been an important discovery. There is also region of the brain called the subventricular zone that is known to be rich in stem cells and has been referred to as brain marrow, with the comparison to bone marrow, where blood stem cells reside. There are now major research efforts aimed at the development of these adult stem cells that have now also been identified in other regions of the brain including the hippocampus. Many research groups can take undifferentiated cells and change them into almost any cell type they can dream up.

So, the simple answer is: We can make stem cells. Some groups harvest people’s own stem cells and just give them back through an IV or an injection into brain tissue. Interestingly most IV stem cell therapies never actually make it into the brain regions that are targeted.

What is the danger of paying $50,000-100,000 or

more for stem cells at a clinic; why not just try it?

Believe it or not there are a lot of dangers in receiving stem cells in one of these “tourist” clinics. There can be infections, tumors and other complications. In the United States the FDA has shut down a number of these operations (tumors, infections, blindness, loss of ability to walk). Other regulatory agencies across the world also commonly shut these operations down both because of safety concerns and because of unsubstantiated claims.

So, we caution folks that this is not a harmless intervention.

What questions should I ask any clinic offering stem

cell therapy for Parkinson’s?

The first idea to be clear on is that stem cells are not a FDA approved therapy for Parkinson’s disease. A number of years ago, several of us at the Parkinson’s Foundation, came up with a list of considerations for anyone considering a stem cell transplant.

1- you should never be charged for stem cell therapy for Parkinson’s.

2- ask for the institutional review board approval letter, protocol and informed consent (for their stem cell project) and bring it to your doctor to examine for authenticity. A true research study will have an approved and monitored protocol and stringent measures for patient safety.

3- if they point to a listing on clinicaltrials.gov as the reason their therapy is legit, please keep in mind almost anyone can access this system and it does not prove legitimacy.

4- if they promise a cure— or alternatively the same treatment is offered for multiple diseases (MS, ALS, Autism, Parkinson’s) this should raise suspicion.

5- the Parkinson’s Foundation put together some helpful tips if you are considering stem cell therapy. Also they have a free 18004PDINFO helpline with professionals who can help to address your questions.

An old blog we wrote for Parkinson’s Foundation may be useful as well as it has some tips on stem cell transplants.

Are there experiences or stories from other people I

can listen to? I want to make my own decision after

understanding all the facts?

One podcast I recommend to persons (and families) with Parkinson in my clinic (M.O.) is Bad Batch by Laura Beil. Her dad had Parkinson’s and he considered a stem cell transplant— as an investigative reporter— Laura takes a deep dive into the facts, challenges and issues. You can listen for yourself and make up your own mind.

Selected references:

Okun MS. 10 Breakthrough Therapies in Parkinson’s Disease. 2015.

Connolly R, O'Brien T, Flaherty G. Stem cell tourism--a web-based analysis of clinical services available to international travellers. Travel Med Infect Dis. 2014 Nov-Dec;12(6 Pt B):695-701. doi: 10.1016/j.tmaid.2014.09.008. PMID: 25449045.

Rahangdale R, Rana S, Prakash P, Ali M, Flaherty M, Synowiec A, Baser S, Scott T. Glioneuronal Growth Infiltrating Lumbosacral Nerve Roots Following Intrathecal Stem Cell Injections Highlighting Perils of Stem Cell Tourism. Mov Disord Clin Pract. 2019 Mar 12;6(4):324-326. doi: 10.1002/mdc3.12741. PMID: 31061842; PMCID: PMC6476591.

Schweitzer JS, Song B, Herrington TM, Park TY, Lee N, Ko S, Jeon J, Cha Y, Kim K, Li Q, Henchcliffe C, Kaplitt M, Neff C, Rapalino O, Seo H, Lee IH, Kim J, Kim T, Petsko GA, Ritz J, Cohen BM, Kong SW, Leblanc P, Carter BS, Kim KS. Personalized iPSC-Derived Dopamine Progenitor Cells for Parkinson's Disease. N Engl J Med. 2020 May 14;382(20):1926-1932. doi: 10.1056/NEJMoa1915872. PMID: 32402162; PMCID: PMC7288982.

Jankovic J, Okun MS, Kordower JH. Stem Cells: Scientific and Ethical Quandaries of a Personalized Approach to Parkinson's Disease. Mov Disord. 2020 Aug;35(8):1312-1314. doi: 10.1002/mds.28187. Epub 2020 Jul 7. PMID: 32529662.

To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside

He also serves as the Medical Advisor for the Parkinson’s Foundation.

To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.