Despite valiant efforts by countless people and organizations, misinformation and a lack of public trust in science continue to be prevalent themes in 2022. Day two of the Till & McCulloch Meetings in Vancouver kicked off with an informative plenary exploring these topics and their implications for regenerative medicine.
The success of stem cell tourism, a serious public relations issue for the cell and gene therapy industry, can be blamed on misinformation (and disinformation): false or misleading information that is spread, regardless of whether there is intent to mislead. Stem cell tourism is a phenomenon that sees patients travelling abroad for treatments they can’t find at home – typically because those treatments are not approved by the country’s health regulator. But the lack of approvals doesn’t prevent uninformed but enthusiastic individuals from promoting stem cells as super cells that can cure all your ills, and unscrupulous clinics from preying on the high hopes of patients and caregivers who are desperate for treatments and cures.
(If stem cell tourism is a topic that intrigues you, you’ll find our past coverage of it here. There are many blogs to choose from as the problem is pervasive. Like the whac-a-mole game, when one clinic closes, another one opens up. It’s very hard to stop stem cell tourism without strong regulation and enforcement. There are also blogs about misinformation and you may enjoy this one featuring journalist Ali Velshi that is titled “Combatting disinformation and misinformation.”)
Australia suffers from stem cell tourism as well as impatient medical practitioners unwilling to wait for the necessary due diligence before treating patients with unproven treatments. Dr. Megan Munsie (University of Melbourne) spoke on “Misplaced trust: how lax regulations and heightened community expectation contributed to stem cell tourism Down Under.” Dr. Munsie explained that there is a high level of awareness and support by the Australian public for stem cell science as a result of extensive media coverage, but not necessarily understanding of the research or its (sometimes) unproven status. A sociological study of stem cell tourism with Monash University and King’s College London found that a combination of support for stem cell science, and frustration and desperation on the part of patients, created an environment that was ripe for medical practitioners to step in and respond to the huge unmet need.
Research on this topic demonstrates that Australian clinics used patient testimonials and slick and deceptive websites to mislead patients into using their services. The problem was compounded by how therapeutic goods were regulated in Australia. The Therapeutic Goods Administration (TGA) “regulates cell products, including blood products, vaccines, and hematopoietic stem cells, used in allogeneic transplantation. However, the TGA has specifically excluded from its regulatory jurisdiction human cells that are collected from a patient who is under the clinical care and treatment of a registered medical practitioner if the cells are manufactured by that medical practitioner for therapeutic application in a single treatment. Consequently, any registered medical practitioners in Australia can offer autologous stem cell therapy to patients for a single treatment or disease, such as OA [osteoarthritis], completely outside of any form of regulation by the TGA.”
Dr. Munsie shared a story about one woman getting injected with stem cells to treat her dementia after her husband found they helped him following injections in his knees. In 2013, the husband identified a physician in Australia who would inject stem cells into her brain and she died seven hours later. A coroner’s inquest followed in 2016. When the Australian government imposed regulatory reforms in 2018 it had the desired effect of some clinics shutting down or no longer advertising stem cell treatments. In 2019 the TGA’s new regulations came into effect following a one-year transition period. The new regulations specify that “all providers of cell and tissue products who operate outside of hospitals will need to meet the TGA’s requirements for safety, quality and effectiveness. Providers who fail to meet the requirements may face criminal penalties.” The doctor mentioned above was banned from taking on new patients but he was allowed to continue treating his current patients. Earlier this year his license was taken away and he shut down his website.
Dr. Munsie explained that the situation has improved in Australia since tighter restrictions have made it more difficult for unapproved stem cell clinics to operate with impunity.
The other presentations in this plenary will be shared in future blogs. Sylvia Okonofua gave a presentation titled “Black Donors Save Lives: A campaign to engage Black people in Canada as potential stem cell donors” and she has generously agreed to summarize her own talk in a blog post. Watch for it next week!
Dr. Munsie is an advocate for patient safety, and an expert in the ethical, legal and social implications of stem cell research. You can watch her discussing some of her presentation themes in the video that follows. I recommend you begin watching at 13:00 minutes.
Stacey Johnson
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