Eithne Donnellan, Health Correspondent, met one of the two doctors at the centre of a storm over the provision of alternative treatment for cancer patients.
There are no direction signs to Dr William Porter's clinic. His name isn't even on the plaque outside the door of 29 Marine Village or the house next door in Ballina, Co Tipperary, across the Shannon from Killaloe, Co Clare. But it is in these bungalows overlooking scenic Lough Derg that Dr Porter is providing what he describes as a breakthrough treatment for cancer patients. And it doesn't come cheap at €20,000 a shot.
Dr Porter, who was struck off for gross negligence in California, moved his light therapy practice from Killaloe to Ballina during the past year after parting company with local GP Dr Paschal Carmody. Dr Carmody was himself finally struck off the medical register in recent weeks for professional misconduct, after several encounters with the Medical Council.
These run-ins were over a host of complaints relating to the manufacture and supply of unauthorised medicines, over record- keeping and sending patient samples for analysis, charging large fees, and over his treatment of deep-seated cancers with photodynamic therapy (PDT).
It is a form of PDT therapy that Dr Porter, who is not registered here, is now providing to patients from all over the world. He calls it cytoluminescent therapy or CLT.
There are no scientific studies on the efficacy of CLT. One review published in a US medical journal found 17 of 48 patients treated with CLT by Dr Porter in Killaloe were dead within six months.
Dr Porter continued to insist this week that his therapy is amazing and beneficial to virtually every type of cancer. He also claims it is beneficial for HIV and AIDS.
When a young woman showed me to the front room of his house/clinic he was alone, relaxing in an armchair. We had just exchanged niceties when men in suits began to file into the room. One was a professor, another a doctor, another a barrister and another a biochemist, I was told.
The barrister, who happens to be former Fine Gael TD Mr Liam Skelly, says he is chairman of the company promoting CLT and that Dr Porter will give me a power point presentation on the therapy. Then I'm told the meeting is being recorded.
The presentation includes pictures of women with breast cancer before and after treatment. The patients are given "an agent" called PhotoFlora derived from microscopic chlororphyll containing plants and developed in Killaloe. It is given orally and the patients are then subjected to light therapy in something resembling a sunbed.
According to Dr Porter the agent collects in cancer tissues and is activated by the light therapy and destroys cancer cells.
I express surprise that PhotoFlora is being given to patients without having been tested on animals. Dr Tom Cleary, a registered doctor whose nameplate is on the door outside, says it's perfectly all right to do so under some EU directive.
The biochemist in the room, who also happens to be a Russian Olympic marathon runner, is dispatched to get me a copy of directive 2001/83/EC. Dr Cleary has taken over from Dr Carmody as the "attending physician" when CLT is administered.
Susan's (not her real name) husband, a man in his late 40s, had part of his liver, stomach, spleen and pancreas removed by the time he heard of Drs Porter and Carmody. Susan says Dr Carmody told her that, not alone would he keep her husband's cancer at bay, he would destroy it. Dr Carmody was not at the East Clinic when The Irish Times called to discuss the case.
I put it to Dr Porter that he told Susan her husband, who is now dead, would be cured by his light treatment for which they paid over €17,000. He denies it.
Susan says that after her husband underwent the light treatment, Dr Porter asked her to look at an ultrasound. He said he could see her husband's tumours dispersing. When she asked where would they disperse to, she claims he told her about a man who had a tumour in his oesophagus and who, after one treatment, "coughed it up". Dr Porter says he would never have said such a thing.
Looking back Susan is embarrassed at having believed such a story, but says she completely believed this man as he was a doctor.
A few weeks later when her husband went for a hospital scan it emerged his condition was worse than ever. She rang Dr Porter and accused him of being a fraud. He hung up on her, she says.
Asked about this, Dr Porter says her husband was "in dreadful shape" when he arrived at the clinic. He had undergone chemotherapy and had lost lots of weight. "The clothes were falling off him," he claims. He says he told her husband he couldn't guarantee anything. "In anybody's book he was a failure from surgery."
Dr Porter says "the scandal" is not that he is providing CLT, but that cancer specialists are not offering it to patients and instead subjecting patients to surgery and chemotherapy.
He says there are many references in medical literature to how brilliant PDT is. I point out that he is providing CLT, for which there are no references. He agrees but says the difference between PDT and CLT is "just semantics". But then he claims CLT is much better than PDT.
I point out that one of the few references to CLT in the literature is a review by Dr Ralph Moss, who documented the outcome for the 48 patients mentioned earlier.
Dr Porter claims the Moss review asked people to report negative reactions and was thus biased, something denied by Dr Moss.
Furthermore, he points out that Dr Moss is not a medical doctor. But he acknowledges several patients died within a short time of treatment and that many suffered after-effects. But he says they were all people with advanced cancers.
Dr Moss's review says it was not possible "to categorically attribute any deaths to CLT". But he says the treatment of this group with CLT was "a qualified failure with a high incidence of after-effects".
Based on the findings of the Dr Moss review, the Medical Council has asked the gardaí to investigate Dr Porter. "We have never been investigated by the gardaí for anything," Mr Skelly says.
When asked by The Irish Times, a spokesman at the Garda press office said he could not comment on individual cases.
Why is the company charging so much for CLT, I ask. These are vulnerable patients who would pay anything to save a loved one, I suggest.
Mr Skelly explains this is a new treatment and costs money to develop. It's not expensive compared to the cost of hospital-based cancer treatments, he asserts, and as it becomes more widely available, he claims, the cost will come down.
Asked was he concerned that a review showed many patients suffered after-effects of his treatment and some believed it had made their tumours increase, Dr Porter says he always does the best he can with "the technologies available" at any given time. He says the treatment has improved since the Moss review and patients are given no guarantees about whether it will work or not. Patients say differently.
Susan kept some of the many tablets which Dr Carmody's East Clinic gave her late husband. The Midland Health Board sent them to a Western Health Board laboratory for examination after being requested to do so by a Department official. In its report of March 2003, the lab said it did not have the resources to analyse them all.
But it made a number of observations. Its report said many of them were labelled as containing vitamins or mineral supplements. The amount of vitamin A on the label of one product exceeded the recommended daily dose.
Susan and a number of other women are now seeking a meeting with the Minister for Health, Mr Martin, to discuss how their relatives were treated by the two doctors. Callers to RTÉ's Liveline programme this week said they should be investigated for fraud.
The Medical Council president, Dr John Hillery, admitted the stories of people attended to by these doctors were distressing. He said specialist treatments needed to be supervised by medical specialists "in appropriate settings".
Those who want to meet the Minister are questioning why he hasn't acted earlier to prevent an unregistered doctor operating in the country.
They are also asking if the Medical Council acted quickly enough in relation to Dr Carmody. The council claims it went to the High Court as soon as it got complaints about his treatment of patients with PDT.
The roles of other bodies should also be looked at, former patients say. Tipperary North County Council acted in recent weeks by serving an enforcement notice on Dr Porter, ordering him to cease using both of his bungalows for commercial purposes.