StemCellTalks is a Canadian high school stem cell outreach initiative that has been running in 7 cities in Canada since 2010. The program has featured over 50 stem cell “experts” during this time, involved the participation of over 500 gradute student volunteers and reached over 5000 grade 11/12 students. This year, sponsored by Stem Cell Network and Let’s Talk Science, the Vancouver chapter was able to partner with the International Society for Stem Cell Research and send five talented student bloggers – Lauren Dobishok, Tanner Jones, Mindy Lin, Vivian Tsang and Michelle Tse – to its Annual Meeting, which was hosted in Vancouver last week from June 18-21th. Three of these blog posts (here, here and here!) have been featured on another excellent stem cell blog – Signals – and we are happy to be able to share the final two posts here on The Node!
By Tanner Jones (Dr. Charles Best Secondary, Vancouver, British Columbia, Canada)
With the promising restorative properties of stem cells, the hopes for treating a variety of diseases are close at hand; however, are these discoveries being accurately conveyed to the public? What are the repercussions of showing diseased patients a treatment that may not be available to them? As patients search for these therapies, many will travel to other countries where their regulatory laws are not in compliance with western standards. This hazardous phenomenon has been classified as stem cell tourism, and it poses an immense risk to patients who seek treatment in illegitimate clinics.
While attending StemCellTalks Vancouver, a conference where youth are educated on the capabilities of stem cells, I was captivated by Dr. Tania Bubela’s speech. Her account of how media can exaggerate research to the general public resonated with me. Dr. Bubela explained that while many clinical trials using stem cells are being run, these trials usually take as long as fourteen years to complete. As these clinical trials are being performed, the media often overstates the work that is being done, creating a certain amount of hype towards the general public. Although this ripple effect seems positive, it leaves many desperate patients confused as to why these treatments are not accessible to them. While seeking treatments that have been reported by the media, many individuals will stumble upon clinics in other countries who have promised successful outcomes for clinical therapy. Using patient testimonials, perspective applicants for these clinics are drawn in, hoping that there experience will be positive as well. In reality, most of these clinics have little evidence or research that supports their claims, yet patients will travel great lengths to visit them as they feel it is their only option. Not only are these clinics extremely expensive, in some cases, treatments my result in harmful side effects for the patient.
The 2014 ISSCR Annual Meeting, held at the Vancouver Convention Centre, provided some of the attendees a rare opportunity to gain a greater understanding of the ethical issues associated with stem cell research. As part of this conference, I was quickly introduced to an issue surrounding stem cell tourism during the Presidential Symposium where Dr. Paolo Bianco, Dr. Elena Cattaneo, and Dr. Michele De Luca, were being presented with the ISSCR Public Service Award. These phenomenal scientists have been championing the cause to halt the introduction of a new stem cell treatment in Italy. The Stamina Foundation in Italy has been treating patients with unproven stem cell therapies that have not been tested in rigorous clinical trials. The Foundation claims that by using mesenchymal stem cells, they can treat Parkinson’s disease as well as Spinal Muscular Atrophy; however, there is no evidence that mesenchymal stem cells can aid in the treatment of either of these diseases. One of the potential dangers of this therapy is the possible generation of bone or fat in organs. These public figures have been tirelessly debating the medical standards and regulatory oversights associated with the Stamina Foundation. As Dr. Bianco humbly accepted his award, he stated that researchers and physicians should be protecting patients from the physical harm, the financial exploitation and the moral illusion that can be produced by these illegitimate clinics.
With the daunting task of ending stem cell tourism, some wonder if it will ever be accomplished. Despite the challenges, Dr. Zubin Master, a Professor at the Albany Medical College, has proposed a few ideas that may lead to the extinction of this problem. He suggests that physicians, patients and the public should be educated on the danger of these unproven therapies. If a greater understanding is developed within the population, many people will be less likely to engage in stem cell tourism. Dr. Master also believes that the most powerful initiative that can be taken to end stem cell tourism would be the involvement of patient advocacy groups. As ambassadors for their disease, patient advocacy groups disseminate information and educate individuals who are suffering from the same disease. These trusted organizations are perceived as a neutral party with the patient’s best interests in mind, while some individuals may view scientists and clinicians as a barrier to certain treatments due to scientific protocols and regulations to clinical trials. With the sharing of information and by releasing statements on the potential risk of illegitimate stem cell clinics and the need for strict regulations, patient advocacy groups can generate an influential effect on patients currently thinking of participating in stem cell tourism.
Will stem cell tourism continue to be a problem in the future? With the prospective advancements in regenerative medicine and other treatments, many hope that patients will remain in their country to seek therapy. Until that time, it is possible that patients may continue to expose themselves to the possible physical harm and financial exploitation associated with these unproven therapies. Unless they are educated on the potential hazards of these illegitimate clinics, stem cell tourism will continue to attract those who are desperate and feel they have no alternatives.