Seeva, be cautious, please!
http://www.msrc.co.uk/index.cfm?fuseact ... ageid=1375
Warning over 'stem-cell tourists'
"I felt I had nothing to lose. I am just going to get worse and worse anyway. I thought I'd just take the bull by the horns and go for it." Moira Ogilvie was desperate. So the multiple sclerosis sufferer joined an increasing number of Scots going overseas for experimental stem-cell treatment not available in the UK.
But experts are increasingly concerned about the safety of such therapies, which have not been properly approved, and they say patients could be putting themselves at risk.
Hundreds of "stem-cell tourists" from the UK are believed to head abroad for these treatments each year and the number of people asking medical experts for advice is growing.
Scientists raised fresh concerns over such cases yesterday as it was reported that an Israeli boy treated with foetal stem cells at a clinic in Moscow went on to develop benign brain and spinal tumours linked to the therapy.
But Ms Ogilvie, 53, has no regrets, despite the warnings from doctors.
"I had tried everything else and nothing was working," she said. "There was no treatment in this country and my MS was just deteriorating."
Ms Ogilvie went to China in November 2007 and stayed for four weeks. Her treatment cost Ł10,000 and included four injections of stem cells from donated umbilical cord, acupuncture, electric stimulation and physiotherapy.
She hoped for a small improvement in her condition after the injections.
However, Ms Ogilvie, of Broughty Ferry, Dundee, who has used a wheelchair for five years, said: "I didn't see it get better. Whether it would have got worse quicker, I don't know.
"It is still very, very slowly getting worse, but I wouldn't say a great deal worse than what it was just over a year ago. Whether what's happening with me would have happened without the stem cells, nobody knows."
A frustration for her and other patients is the slow progress towards making stem-cell therapies widely available in the UK.
"They are all very busy in their labs, but they need to do what they call the transitional stage and get it to the patients," Ms Ogilvie said. "It needs a lot of fine-tuning, but I do think stem cells hold the key to unlocking cures, or at least helping to modify diseases such as MS."
Interest in therapies developed using stem cells – the building blocks of the body – is growing rapidly and many people are travelling to countries such as China, India, Mexico and Germany to have treatments not available in Britain.
Charities say that, as treatment options run out for people with conditions such as MS, Parkinson's and motor neurone disease, many feel they will try anything – however risky – in the search for a cure.
Dr Marilyn Robertson, director of the Scottish Stem Cell Network, said more people were attending its public meetings to ask for advice about treatments.
But she said scientists had serious concerns about the safety of these treatments. "We hold a lot of public outreach events to keep people informed and allow them access to people who they can ask these kind of questions of," she said.
"Often having some control over their situation can be beneficial to patients who have these treatments. But as stem-cell biologists, we just want to make it clear that there are no approved treatments."
Dr Insoo Hyun, from the International Society for Stem Cell Research, based in the United States, echoed the concerns of experts in Scotland.
"My sense is this is a growing problem," he said. "There are a number of studies showing a proliferation of these stem-cell clinics popping up across the world. Patients need to know there are no proven therapies using embryonic stem cells."
James Lawford Davies, a solicitor specialising in reproductive and genetic technologies, said there was plenty of anecdotal evidence to suggest hundreds of people were travelling overseas for stem-cell treatments.
He said: "The problem is where they are not properly informed about what they are doing and the companies providing these treatments are not above board or open about the data that they have, if they have any data about these treatments at all."
The Parkinson's Disease Society, Alzheimer Scotland, the Motor Neurone Disease Association and the Multiple Sclerosis Trust all reported a growing number of patients asking their advice about stem-cell therapies overseas.
While they did not back going abroad, they accepted that many patients would do so but advised them to get advice from their GP.
Case study: Treatment trips cost me Ł10,000 – but I'm convinced they work
Audrey Hynd-Gaw has twice left her home to travel abroad for stem cell therapies to treat her multiple sclerosis. In the first treatment three years ago, she had stem cells from donated umbilical cord injected under the skin near her temples and spine in Ireland.
Then last year, she travelled to Cologne where she had a therapy which involved removing her own stem cells, treating them and then putting them back by lumbar puncture.
She has spent more than Ł10,000 on the two trips, but believes they have helped slow down the progress of her disease and given her more energy. She says she would like to go again.
"I think it has worked for me," the 39-year-old said. "It could be a placebo effect but if it works, that is fine with me."
Mrs Hynd-Gaw was diagnosed with MS 20 years ago, and felt she had no other option but to try the treatments as her condition got worse. "I just feel I have to try anything I can."
The artist, of Prestwick, who has a 10-year-old son Cameron, said researchers needed to take a chance and start using more experimental treatments if science was ever to progress.
"There has been a lot of debate about these treatments. But I think if they are only going to do tests on rats and mice, they are never going to make a breakthrough with MS."
Mrs Hynd-Gaw said she had never been misled or misinformed about the treatments, and was never told she would be cured.
"I want people to know that there are options out there for them, though they are not without risk."
What are stem cells?
They are cells in the body which have the ability to divide and create more stem cells. They also have the ability to mature into specialised cells such as skin, heart tissue, brain cells, muscle or blood.
Embryonic stem cells are the earliest form of stem cells and can transform into many types of cells.
What are stem cell treatments?
These therapies use stem cells to replace or repair a patient's cells or damaged tissue. The cells may be injected into the blood, into the body through a lumbar puncture or straight into the damaged tissue.
The only fully tested and approved stem cell treatment is bone marrow transplantation.
What concerns are there about stem cell therapies?
This area of science is still very new and scientists say they still have much to learn about how stem cells work. Preparing stem cells for treatment can be difficult because unlike drugs they cannot necessarily be produced and tested for quality in large batches.
Scientists are still looking for the best ways of getting stem cells to the areas where they might have the best chance of repairing material. Side-effects could include cells growing in the wrong place or even causing tumours.
Why are stem cell treatments not yet widely available?
Much of the work is still at an early stage. As with all treatments, stem cell therapies have to be fully tested before they become widely available.
What should people consider when thinking about going overseas for stem cell treatments?
Experts say patients should be sure that there is good scientific evidence behind a treatment and that it will be safe and effective. The International Society for Stem Cell Research urges caution over the use of patient testimonials by companies.
Are there risks from stem cell treatments?
Patients should know exactly where the stem cells they are receiving have come from. There could be a risk of contamination and infection.
Foreign clinics are fraught with risk
Analysis: DR BELINDA CUPID
WE are very concerned about patients going overseas for stem cell treatments.
At the Motor Neurone Disease Association, we get a lot of inquiries about unproven treatments – things that do not have a scientific rationale to support what the clinic says.
They are also unproven in terms of safety which is our biggest concern. You could argue that if a treatment is not doing patients any harm and they feel better for it, there is no reason not to go ahead. But as well as not knowing whether they work, we just do not know whether they are safe.
About two-thirds of the calls we receive about unproven treatments concern stem cells. People find out about them on the internet or from reading reports about other patients.
Different types of clinic will offer different things. Some stem cells might be given in a similar fashion to a blood transfusion; other methods might be more invasive. In one clinic in Beijing, we heard they are drilling a hole into the skull and injecting the stem cells directly into the brain.
The problem is that some countries do not have regulations to cover these kinds of clinics or do not have the power to go in and check their procedures and, if necessary, close them down.
Some patients are quite savvy and have a pretty good idea that these are unproven treatments and perhaps the people running these clinics are making false claims. When we give them our opinion, they are often reassured that their first thoughts were right. Others are really keen and just want to do it because it means they have done something. We understand this view.
A concern for us is the objective testing of any improvements after treatments. The patients and the clinic have vested interests in seeing improvements. This is not the same as controlled trials.
We believe stem cell tourism poses several safety concerns and patients need to carefully consider these before having unproven treatments.
• Dr Cupid is research manager for the Motor Neurone Disease Association
Source: The Scotsman ©2009 Johnston Press Digital Publishing (19/02/09)