The more attention stem cells, cell therapies and gene therapies get, the more education there needs to be so the public can differentiate between approved and unapproved treatments.
At this time, there are over 1,220 clinical trials ongoing worldwide (including tissue engineered products). According to the Alliance for Regenerative Medicine[1], there are 152 Phase III clinical trials and regulatory decisions are expected on multiple products in the coming months.
In Canada, there are five approved products as follows:
- Prochymal – for the treatment of acute graft versus host disease (GvHD) in pediatric patients, 2012
- Kymriah – for the treatment of patients up to 25 years of age with B‑cell precursor acute lymphoblastic leukemia (ALL), 2018
- Yescarta – for the treatment of adult patients with relapsed or refractory large B-cell lymphoma, 2019
- Luxturna – for the treatment of patients with inherited retinal disease, 2020
- Zolgensma – for the treatment of spinal muscular atrophy in pediatric patients, 2020
Around the world, the number of approved cell-based immunotherapy products, gene therapy products, cell therapy products and tissue engineered products is much larger. (Here is the U.S. FDA’s list.)
As the industry continues to heat up and more treatment options become available, a worrying trend is the amount of direct-to-consumer advertising that is happening; and, especially, that it is misleading and contains misinformation. (To read the study in the Journal of Bone & Joint Surgery, upon which the article is based, click here.)
The public can be forgiven for being confused about which treatments are safe. There are health-care practitioners, stem cell clinics and even some hospitals hawking unapproved treatments.
Resources for patients
The solution is for regulatory agencies to stop this behaviour, but that isn’t happening quickly enough in Canada or the U.S. In the meantime, there are excellent educational resources created for the public so patients can educate themselves. In no particular order, here are some reputable and reliable sources for patient information. I’ve linked to relevant pages:
- Stem Cell Network (Canada): reaching out to students and the public
- Ontario Institute for Regenerative Medicine: about stem cells and about stem cell therapies
- International Society for Stem Cell Research: patient resources
- The Niche (excellent and prolific blog!)
- National Institutes of Health: stem cell information
- California Institute for Regenerative Medicine: for patients
- Harvard Stem Cell Institute: for patients
- NHS: stem cell and bone marrow transplants
- EuroStemCell
- Stem Cells Australia
- Australian Regenerative Medicine Institute: for patients
- Australian Government Department of Health: stem cell treatments and regulation – a quick guide for consumers
- Hospitals and health charities share reliable information for patients, usually in the context of a particular disease or diseases.
- Signals also creates posts with information for patients categorized under patient information
This short news item packs a lot of helpful tips into a 90-second report. I encourage you to watch it.
[1] Download the 2021 State of the Industry briefing
Stacey Johnson
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