FOR THE past month, Dr John Dunphy has been the centre of a media frenzy and of heated debate. At his surgery in Carrigaline, outside Cork city, he has been providing controversial stem cell therapy . . . which has now ceased. Both grateful patients and trenchant critics have been talking to the press. When he started the therapy Dunphy had no idea of the fuss that would ensue. "You bet I didn't, " he says.
In his first interview since the controversy started, Dunphy explained that although his medical practice has provided alternative therapies in the past, he never had any intention of becoming the only centre in Ireland and Britain to provide stemcell therapy to the paying public, in conjunction with the controversial Swiss company, Advanced Cell Therapeutics. ACT has a clinic in Rotterdam, Holland.
"It was only when my sister , who suffers from multiple sclerosis, went on the waiting list for Rotterdam, and was told she would have to wait two years to be seen there, that I thought of providing the therapy here, " he says.
Representatives from ACT flew to Carrigaline, says Dunphy. They found a surgery that was accessible to disabled people, only a short drive from Cork airport and the ferry port and with hotel accommodation nearby. After treating a small number of Irish patients in February, ACT suggested that the pressure could be taken off their Rotterdam clinic if UK patients could visit Cork instead.
"So I reluctantly agreed, " says Dunphy. His attitude changed once the patients began to arrive in their droves. "They arrived sometimes with four or five family members, " says Dunphy. "I've been immensely impressed by how supportive their families and communities have been. You don't see that aspect of life any more. Often their communities had raised money for them to come."
Fundraising is needed, because ACT routinely charges 19,500 per treatment. This phenomenal sum is paid by people with multiple sclerosis and spinal injuries, whom conventional medicine often cannot help. In certain circumstances the fee can be smaller.
People like Denise Ryan of Tralee, Co Kerry. She was diagnosed with progressive MS three years ago, at the age of 26. Since receiving an injection of stem cells on 16 February she has seen some small improvements. Dunphy tells patients to wait at least eight months before coming to judgement on the success or otherwise of their treatment. Denise Ryan, so far, has no regrets.
"I'm very pleased with everything Dr Dunphy did for me, " she says. "My eyesight is better. I was in Cork on Thursday and people who hadn't seen me for a while could see an improvement. One eye was looking like a lazy eye and now it doesn't seem to.
I seem more steady. I would definitely do it again.
I haven't ruled out more improvements to come."
"Neurologists seem to pooh-pooh any idea of giving people hope, " says Dunphy, who wrote to the Irish Medical Times last week to argue his case. "But I would see that people need that as part of any therapy, particularly one for auto immune disease.
"The problem here is we're in frontier territory and we're still on a learning curve, " adds Dunphy. "We're really in a paradigm shift. Neurology is stuck in the old paradigm, where they seek to treat MS with the 'pharmaceutical magic bullet' approachf My response is that, unlike the recent drug trials [in the UK, which gravely compromised testers' health] we are not administering stuff that poisons rats. We're dealing with human tissue, and a vast amount of research has been done on stem cells in the past four years."
However criticism of Dunphy, and more specifically of ACT, was swift. Although it has proposed making Ireland its European HQ, complete with a research and development facility, ACT seems inaccessible to journalists . . . unlike its patients. ACT does not respond to phone calls. On its website, the section labelled Medical Advisory Board shows a notice: 'Content for this page is currently under revision'. The website lists ACT clinics in Brazil, Turkey, Saudi Arabia, the United Arab Emirates, Pakistan and Spain, as well as Rotterdam. No clinics are sited in the UK, the US or France, where medical licensing laws are rigorous.
ACT's research information seems anecdotal.
Dunphy says a trial was about to start at Carrigaline but neurologist Dr Brian Sweeney, of the Irish Institute of Clinical Neuroscience, says "most people charging thousands of euros do their trials beforehand".
There are also questions about the huge sums charged. "The technology to harvest these cells [from the umbilical cells of newborns] only costs a couple of thousand euros, " says Sweeney.
For Sarah Boseley, who has been following the ACT story as health editor of The Guardian, the company's lack of transparency is the most worrying aspect.
Patients fill out forms before treatment, but the worry remains that ACT fails to establish a baseline with each patient against which future developments can be measured. The follow-up for each patient, according to Dunphy, is entirely handled by ACT, with a phone call to a patient each month.
Denise Ryan says she paid her 19,500 directly to ACT. Dunphy says he is is paid only for the use of his clinic: "I'm not making a fortune."
"We have nothing against Dr Dunphy, " says Sweeney. "But there are deeper issues involved. I don't underestimate the suffering of MS at all. I see it every day. Our system is not perfect. There are only three neurologists in the Munster area and there should be 20. I'm not saying what we have is perfect, but at least a drug like beta interferon [used for MS] has undergone randomised control trials.
Pharmaceutical companies are not wonderful human beings either. But at least people should be protected."
The Irish Medicines Board has informed Dunphy that, under new EU legislation, he needs a licence to store the stem cells, even though they are on his premises only for a couple of hours. "Yet the Minister of Health brought in a vaccine against avian flu untested, untried or anything, " says Dunphy.
He has also been referred to the Fitness to Practise committee of the Irish Medical Council.
"If I was 30 years old it would terrify me, " says Dunphy. "But I'm at a point now where 80% of my work is outside my licence, so I am not dependent on it.
I have done nothing illegal. If anyone can come up with a legal way for me to treat these people I want to hear about it."
Meanwhile the claims of dramatic results continue to be published, largely unchallenged, in the press. And ACT, unlike Dunphy, remains remote from the fray.
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