JDRF - Juvenile Diabetes Research Foundation

“Stem cell tourism” is a term that has recently emerged to describe the increasing number of people heading overseas for medical stem cell treatments that are not approved or available in Australia.

In Australia, and many other countries around the world, stem cell therapy is only approved to treat blood disorders such as leukemia. Whilst research is moving rapidly and showing great promise, the use of any type of stem cell as a therapy for diseases like type 1 diabetes is still firmly classed as experimental. This doesn’t mean these therapies won’t work, just that scientists and clinicians have deemed there isn’t enough data available to demonstrate patient safety as well as a long term benefit.

Not all countries have such strict protocols for demonstrating the safety and worth of a medical treatment, and a number of stem cell “clinics” have taken advantage of this lack of regulation. Often advertising via the media or internet, the treatments offered at these privately run centres are often extremely expensive and have little to no scientific rationale. Worryingly, the International Society for Stem Cell Research has also shown that a large number of these programs have little regard for patient health and safety, and in many cases, are highly unlikely to provide any benefit whatsoever.

There are places where you can find out more. If you are considering any kind of overseas medical therapy, your first port of call should always be your medical specialist or health care provider. They will be able to give you a run down of what is, and what may soon be, available to you. The government-funded Australian Stem Cell Centre has also published a handbook for people considering stem cell therapy. As well as providing lots of information about how stem cells work, it aims to provide the information required to make an informed decision.

You can go to the Australian Stem Cell Centre website for more information, www.stemcellcentre.edu.au, and to obtain a copy of the patient handbook.

Questions to ask when considering stem cell treatment

Is the treatment offered within a mainstream medical environment?

In Australia, proven stem cell treatments are available through the public health system. All experimental treatments and clinical trials must be undertaken at an institution that has been accredited by a relevant Federal Government agency (usually the NHMRC). Not all countries place such a focus on patient safety so understand what regulations do exist and make an informed decision of the potential risks versus the advertised benefits.

Does the provider charge for the treatment?

In Australia, any accepted mainstream stem cell treatment will receive some level of reimbursement from either Medicare or a private health fund. Experimental treatment received as part of a clinical trial should not incur any charges at all, and this is the case in many other countries as well.

What evidence do they use when promoting the therapy?

The best way to assess if a therapy is effective is to check if it has been written up in the scientific literature and been assessed by government sanctioned clinical trials. Don’t be shy to ask for copies of their research publications, results of previous clinical trials and copies of relevant government approvals – they will gladly give them to you if the therapy is proven and accredited.

Patient testimonials and media coverage are NOT evidence that a therapy is safe and effective. Remember it is possible to make all kinds of unproven claims, particularly on the internet, so contact a local health agency or disease advocacy group to establish their credentials.

Where do the stem cells come from?

Whilst we talk about stem cells as a single entity, there are in fact a number of different sources of cells that can act in very different ways. If the proposed treatment involves stem cells from an external source (for example donor tissue, cord blood or embryonic cells) it is highly likely that your body will reject the foreign cells unless immune-suppression therapy is also given. If the stem cells have been taken from animal tissue there is a risk of infection from animal viruses. Embryonic stem cells, if introduced in an undifferentiated state, may become cancerous cells.

What does the therapy involve?

Whilst the type of stem cell used is important, so is the process by which it is administered. Whilst the basic hygiene of the medical centre is obviously important, the standards of any associated laboratory procedures are also critical to prevent contamination and infection. Many therapies involve quite serious medical interventions such as lumbar punctures. These procedures themselves can be risky and really should only be conducted when absolutely necessary. Finally, make sure you identify if follow-up medical care is provided.