Update
According to a new report looking at the online marketplace “
What you don’t know can’t hurt you” published 16 August 2011 by the
Australia Institute, more than a third of Australian internet users (37 per cent) are unaware that search engines display paid advertising.
Here at the ASCC, we have previously expressed our concerns about a lack of transparency with respect to paid advertising on the web (see below) and now this report confirms our suspicions. Unlike ads in newspapers and magazines or on television, what is promoted on the internet is often not subjected to the same degree of scrutiny or regulation. For example, today when I type ‘stem cell treatment’ into Google Australia at least nine paid advertisements are displayed offering mostly unproven therapies.
As the Australia Institute comments in its media release "Search engines such as Google, Yahoo! and Bing have become an essential service much like electricity, telephony and banking. However, key aspects of how they operate, such as how their search algorithms actually work and the nature of their commercial arrangements with advertisers, are currently shielded from public scrutiny.”
As always, the ASCC encourages you to get the full facts before participating in any of these treatments. The checklist on page five of our
Patient Handbook can help and as always we encourage full and frank discussions with your doctor or specialist.
21 September 2010
Megan Munsie, PhD, Senior Manager – Research and Government at the Australian Stem Cell Centre originally wrote this piece for the
Australian and New Zealand Spinal Cord Injury Network.
It seems that almost every week there is a story in the newspapers
about stem cells. Often these stories feature interviews with patients
who have benefited, or hope to benefit, from new therapies using stem
cells.
While the stories reinforce the promise of regenerative medicine, and provide hope for many people suffering from currently incurable conditions, what is often lacking is any credible explanation on why the treatment worked. Within these articles it is usually just accepted that the improvement was due to the stem cells and if the reader wants to find out more, it is up to them to pursue. However, getting reliable information on stem cells is not so simple.
You can discuss the story with your doctor, but they may not even be aware of this latest development - especially if the treatment is still considered experimental by the medical community and not yet available in Australia. You can discuss the story with someone you know through your support network, perhaps someone who has a similar condition or tried the new treatment. It is much more likely that you will first turn to the Internet to find out more.
Simply type “stem cells” and the condition you are interested in into your favourite search engine and in a matter of seconds you will be presented with a long list of sites to visit. But which sites should you visit? Which sites are reputable? Which sites are paid advertisements? Which sites should you believe? Unlike ads in newspapers and magazines or on television, what is promoted on the Internet is often not subjected to the same degree of scrutiny or regulation.
The way the information is presented on most websites offering stem cell treatments is very compelling, especially when it is accompanied by footage of an interview with a patient who has experienced success. The websites can look very professional and appear to have expert endorsement, but they often contain information that is not accurate and sometimes blatantly misleading. These sites are effectively selling hope with no medical or scientific evidence to back up their claims, or even any demonstration that the proposed treatment is safe. In addition, such treatments often aren’t cheap and patients are usually encouraged to arrange multiple visits.
It is important to remember that stem cells from bone marrow and cord blood have been used by doctors for many years to treat patients with leukaemia and other diseases of the blood and immune systems. However, the use of bone marrow and cord blood, or indeed any other stem cells, for other conditions are considered “experimental” by the medical community. Studies are underway in Australia and overseas to see if these stem cells can be used to repair broken bones, replace cartilage, restore sight or even help repair the heart, to name but a few. These studies are called “clinical trials” and are used to prove that a new medical treatment is safe and effective before it is accepted as a legitimate therapy.
There are very strict rules in place to make sure that the necessary information is collected during a clinical trial, that patients participating in a clinical trial are fully informed of all risks and not required to pay to be part of a clinical trial. Trials are conducted in “phases” with the early phases usually involving a small number of participants designed to primarily test whether the treatment is safe. Once proven safe, trials are then undertaken to test whether the treatment actually works. No matter the outcome from the trials, the doctors and scientists involved are required to share their results so that others can learn and benefit from the study.
You may have heard about a clinical trial for spinal cord injury in the USA where it is planned that cells, made from human embryonic stem cells, will be injected directly into patients. This initial trial will only involve 8-10 patients who have a complete spinal cord injury (T3 to T10 lesions) that has only recently been acquired (between 7 and 14 days after injury). Patients will not pay to join this study.
Geron, the company running the trial, plan to intensively monitor the patients at regular intervals during the first year for any sign of complications and any evidence of any return of sensory function or lower extremity motor function, and then continue to monitor the participants for the next 15 years. This study is not only interesting because it will be the first time that a possible treatment using embryonic stem cells will be rigorously assessed, but this study has also been a long time in the planning and preparation. While final approval from the US regulatory body (FDA) was only received in late July, Geron have invested many years convincing the regulators that their study was justified and safe. They were required to demonstrate that the proposed treatment worked in animals first and also that appropriate safeguards were in place to protect the interests of the participants and monitor the patient’s progress.
In stark contrast to this cautious approach, there are some clinics and companies overseas who are already offering to use stem cells to treat spinal cord injury with no regulatory standards in place, little or no proof from studies in animals, or any intention of following the patient’s progress once they have left the clinic. These organisations are also reluctant to share their results with other members of the medical community and also they charge large amounts of money for these treatments.
It is completely understandable that when confronted with very few options, patients and their family and friends will search everywhere for possible cures. What is important is that they get the full story before deciding to try unproven stem cell treatments. They need to do some research beyond Dr Google and get answers to some simple questions. They should find out exactly what is being offered and make sure they understand whether the treatment is already a proven therapy or whether it is still being assessed. They also need to make sure they understand the risks associated with the treatment and should ask what will happen if there are any complications with the treatment. They should find out if the patient’s progress will be monitored and, if so, for how long over what period of time. They must fully understand the costs involved, including costs associated with travel, insurance and accommodation. Finally, they should discuss the possibility openly with their doctor.
To assist in this challenge, the Australian Stem Cell Centre and the International Society for Stem Cell Research (ISSCR) have produced information booklets, available from their websites, for patients contemplating experimental stem cell therapies. There is also a new website, Take a Closer Look at Stem Cells, that has been set-up by the ISSCR to further help evaluate claims.
Ultimately it is the patient’s decision whether to pursue alternative treatments but now more than ever it is important to remember the old adage – buyer beware!
Megan Munsie, PhD
Senior Manager – Research and Government
Australian Stem Cell Centre
Co-author of the ASCC Patient Handbook – Stem Cell Therapies Now and In the Future and the International Society for Stem Cell Research’s Patient Handbook on Stem Cell Therapies.