The Royal Australian and New Zealand College of Ophthalmologists (RANZCO) and Stem Cells Australia – have joined up to launch a patient information resource for people considering stem cell treatments for eye conditions.
Stem Cells for Eyesight is an informative patient resource that provides a useful summary of the joint position statement on the role of stem cells in treating eye disease. This leaflet provides patients with important information about newly emerging stem cell treatments for eye sight.
The patient information resource warns about accessing treatments that have not been shown to work in clinical trials and cautions against unsubstantiated marketing claims and patient testimonials used to endorse commercial services. For a new stem cell treatment, patients are advised to ensure it is part of an ethically approved clinical trial.
The patient information resource helps patients make more informed decisions about their eye care by encouraging them to ask five important questions about stem cells for eye sight before undergoing any form of stem cell treatment for ocular disease:
1. What are stem cells and how can they help?
2. What are the safety concerns?
3. Is there evidence that stem cell therapies work?
4. Stem cell treatments are still under investigation, so what does that mean for me?
5. How can I make an informed decision about my options?
Meeting an Urgent Need
There was an urgent need for the RANZCO and Stem Cells Australia to develop the Stem Cells for Eyesight leaflet and the RANZCO position statement as patients have gone blind overseas from stem cell treatments. The disastrous results of a stem cell treatment for macular degeneration using cells obtained from liposuction were reported in the New England Journal of Medicine and were highlighted by the New York Times and Washington Post. The patients who lost sight incorrectly thought they were participating in government approved research, having seen a study by the clinic advertised on the government clinical trials website.
In Australia there have been recent increases in demand for, and availability of, stem cell treatments. Although clinical trials are underway, and some are delivering promising results, not all treatments are supported by evidence in terms of safety and quality. Further clinical testing over a longer period of time, across a larger patient sample, is needed to better establish safety and effectiveness.
Professor Stephanie Watson, RANZCO ophthalmologist and Chair of the Ophthalmic Research Institute of Australia and Professor at the Save Sight Institute, University of Sydney, explains, “The potential of stem cells for treating a range of ocular disease is really very exciting. We are just beginning to understand what might be achievable and in the future we may have cures for eye conditions that are thought of as incurable today. That is all thanks to the research that is happening now. However, more research is required before we know the full impact of these treatments and how safe they are over the longer term. For this reason, we recommend that people only take part in clinical trials that have ethics approval and meet the standards of Australia’s regulatory body, the Therapeutic Goods Administration. Approved clinical trials will be registered on the Australian and New Zealand Clinical Trials Registry and will monitor patients over time to assess the long-term safety and outcomes of treatment. Patients should ensure that treatments have been tested thoroughly in clinical trials and long term outcomes data is collected.”
Associate Professor Megan Munsie from Stem Cells Australia and Deputy Director of the University of Melbourne’s Centre for Stem Cell Systems added, “We hope that our new resource can help patients and their families make more informed choices. Unfortunately, for too long commercial stem cell clinics operating outside mainstream medicine have made inflated and simplistic claims about ways to restore or save vision. While they may use the language of science, what’s offered by these clinics is effectively a trade in hope. We need to draw a greater distinction between legitimate stem cell research and commercial exploitation. Our new resource helps guide patients in their research and hopefully inform discussions with their treating ophthalmologist.”
