KEY POINTS:
One of my dearest readers, recently diagnosed with breast cancer, was telling me how her two sisters had taken the news that they had terminal cancer. One "fought and tried everything", she wrote, while the other went more quietly. "You just have to do what is in you to do, I think."
I don't know what I'd do. My nephew has lymphatic cancer and should not still be here. On the advice of a complete stranger, whom he met on a flight to Tonga, he went to Australia for a course of organic treatments to cure his cancer.
We hoped for a miracle because it seemed wrong not to, but the treatments made no difference. My nephew's savings shrank, but his tumour kept growing.
If you saw coverage last week of Pharmac's decision not to fund the 12-month course of Herceptin, you might be forgiven for thinking that this was a clear-cut case of a heartless government agency issuing a death sentence to every woman with HER2-positive breast cancer.
The Breast Cancer Aotearoa Coalition, a patient advocacy group, called Pharmac's decision "inhumane". Winston Peters described it as "a disgrace" which denied New Zealand women "an internationally standard treatment". Anxious breast cancer patients were shown on TV.
National MP Jackie Blue said NZ women had been "cruelly let down". National has promised to fund 12 months of Herceptin if elected (which may be how it plans to trim the public service, for who needs the advice of independent experts when you can have politicians making all the decisions?)
So Pharmac is either stupid or uncaring. Only a few have called them brave - the Women's Health Action Trust, which says the Herceptin debate has been "intense and clouded by emotion and wishful thinking", and a group of British doctors and health practitioners, who praised New Zealand for its courage to pursue what many in the UK consider the best treatment option for women in the early stages of HER2-positive breast cancer: the nine-week course of Herceptin.
How the UK became one of 32 countries to offer the so-called "gold standard" treatment of 12 months makes for instructive reading.
The answer lies both in restrictions which prevent the UK drug licensing authority (Nice) from considering all the evidence, and the considerable pressure exerted by "high-profile patients, media bias, industry support, and political gaming", according to a group of oncologists who noted in the British Medical Journal that hundreds of their cancer patients would miss out on cheaper, effective and in some cases life-saving treatment to fund demand for the more expensive Herceptin.
Amid a highly emotive media campaign, and even before Nice had been given a chance to examine any data on the new "wonder drug", several women demanding Herceptin had taken their local health trusts to court, and politicians were rushing to guarantee that any woman who needed Herceptin would get it.
It was difficult for a HER2-positive breast cancer patient like Jane Keidan, a consultant haematologist, not to feel that "if I did not receive this drug then I would have very little chance of surviving my cancer".
Keidan says her story, published in the British Medical Journal in January 2007, shows "how even a medically trained and usually rational woman becomes vulnerable when diagnosed as having a potentially life-threatening illness".
It was Keidan's doctor who pointed out the little-reported cardiac side-effects of taking Herceptin long-term: "A more careful analysis of the '50 per cent benefit' which had been widely quoted in the medical and non-medical press, and fixed in my mind, actually translated into a 4 to 5 per cent benefit to me, which equally balanced the cardiac risk.
"So I elected not to receive the drug and will be happy with this decision even if my tumour returns."
Actually, if Keidan was living in New Zealand (or even Australia), she wouldn't have had to make that choice. She would receive the nine-week treatment regime that has been shown to be as effective as the 12-month course, but without the serious risk of heart failure posed by the longer treatment.
Yes, this is based on the small FinHer trial, but it's a trial nonetheless that's regarded as scientifically robust and has fully reported its results and methodology, unlike the three larger studies funded by Herceptin's maker, Roche. None of these has published individual results that would allow scientific scrutiny and peer review.
A recent article in the Lancet claimed that Herceptin as used throughout much of the world is much less effective than thought because important clinical data from 1000 women has been omitted from published results, resulting in "publication bias".
As the Lancet's editor Richard Horton has noted, some crucial data on side-effects was missing, and the fact that results from two of the three trials had been combined suggest "that neither trial alone would demonstrate a positive result".
Why does Roche push the 12-month regime? Why not nine weeks or even six months?
The answer seems obvious, but perhaps I'm a little too inclined to cynicism where drug companies are concerned.
