There's a certain irony in this story: a sceptic and über-rationalist finding a cure for his cancer in a mysterious hotchpotch of Chinese herbs, only to have it taken away by an apparently obdurate bureaucratic organisation. This has triggered an imminent personal tragedy in my life, and the purpose of writing this is to share what I believe to be the quite extraordinarily callous way in which people who rely on any "unconventional" medicine are treated by those who control and regulate the industry.
In 1997 my father was diagnosed with prostate cancer. For a while it was controlled by a series of conventional hormone treatments, but these eventually failed. He then turned to chemo- and radiotherapy, with their associated side-effects. The prognosis wasn't good and his quality of life went into freefall. Then, early last year, I suggested he try a herbal remedy called PC Spes (PC for prostate cancer, and spes - Latin for "hope").
I had read on the internet - during long trawls to find something, anything, that might help my father - that this carefully prepared mixture of eight herbs, including ginseng and liquorice, had been successfully used by people with prostate cancer in the US, despite there being very little known about how it worked. By chance - quite independently - my father's oncologist also suggested a course of PC Spes. But I was still surprised when my father, a scientist and a raging rationalist, placed his first order with a US-based company.
He never looked back. My father's PSA (prostate-specific antigen, a "blood marker" that allows you to track the progress of the cancer) plummeted from 380 to 40 in just one month: in other words, from a terminal level to a safe one. And from then onward, apart from on the occasions when he was unable to take PC Spes, my father's PSA remained below 10, which is to say, thoroughly under control. In the one month when he couldn't take PC Spes, because of a minor operation, his PSA shot up to 108. It returned to its controlled level again only once the normal dose was resumed.
So, no scientific trials here. All I can say is that this herbal supplement worked for him: it worked beyond all doubt. Family, friends, nurses, surgeons, oncologists, and not least my father himself, were amazed. It gradually became clear to us that my father's life depended on PC Spes, and he became happily resigned to taking it for the rest of his life. Or so he hoped.
On February 7 this year the California Department of Health Services, working with the US Food and Drug Administration, announced a nationwide recall of PC Spes because of "possible contamination", requiring distributors to alert customers and return bottles to the manufacturers (although very few were returned). Since PC Spes was only marketed and sold in America, the decision had international impact: it was nowhere else to be found.
In an instant, thousands of men with prostate cancer knew that years could be knocked off their life: in America, an estimated 10,000 men with advanced prostate cancer were dependent on the drug, and there are no doubt many more affected in this country and around the world. For my father, it was catastrophic. When his supply ran out, we calmly tried to find a new source, or an alternative to PC Spes, but five months later, he has still not found a supply. And all the while, he has been growing steadily sicker.
The only ray of hope came a few weeks ago, during a routine visit to hospital, when my father bumped into a nurse who had cared for him during the early stages of his illness. With refreshing honesty (characteristic of all the healthcare professionals we have had dealings with), she expressed unrestrained shock that my father was still alive, as if somehow he had come back from the dead. When told that his secret was the now banned PC Spes, the nurse excitedly told my father that a previous patient of hers had taken PC Spes but had died of an unrelated illness, leaving her his remaining supply with the simple instructions to "give it to someone who really needed it". My father had apparently struck gold.
Sadly, such serendipity cannot be relied on, and that supply came to a soul-destroying halt all too soon (although while he was taking this two-week supply, my father's condition showed palpable signs of improvement).
All through this, my father has maintained constant email contact with fellow PC Spes users in the UK and America. They pool information about possible new supplies, and the camaraderie is of some comfort to my father. These men also carry out vital, if entirely informal, drug trials on possible replacements for PC Spes. There is an understanding between these men that if it works for one of them, it might work for all of them. At one point in March there was much excitement about a new British PC Spes imitation. My father found himself first in line for this new herbal formulation, but in the end his body didn't respond and his PSA continued its unabated course upwards. A flurry of emails and a communal transatlantic sigh later, the product was consigned to the reject pile.
So the search for a replacement continues. But I do not understand why it is so difficult. This is a herbal supplement that may well prolong my father's life: why won't someone give us some?
It turned out that PC Spes was recalled from the market because it contained a small and effectively harmless trace of warfarin, a commonly prescribed blood-thinning agent. How it ended up in the product no one knows, although the finger of suspicion has, inevitably, been pointed at the pharmaceutical industry. America's rapidly expanding herbal medicine industry is now worth an estimated £4.2bn - and that has direct financial impact on the conventional medicine market. The two are not friends: can foul play be absolutely ruled out? But it sounds paranoid even to talk about sabotage.
According to the Wall Street Journal, BotanicLab, the manufacturer of PC Spes, says that it does not believe that warfarin was present. It suspects that the authorities might have detected a chemical that occurs naturally in the plants used to make the remedy. The company has ordered new tests at an independent lab; the authorities say they will consider them. Meanwhile, reports on the internet talk about PC Spes being tainted with "conventional drugs", or being dangerous. They talk about the fact that no one knows about the "long-term" effects.
All this is meaningless to my family, and families like ours. We know that whatever is in it, or was in it, it worked. If the firm that was making it was making an error, or was less than honourable about what was going into it, frankly: who cares? Whatever they were doing, they were doing it right.
In our experience, PC Spes has a fairly wide acceptance in the medical community in the US and the UK, though it is less widely known in the latter. Many oncologists with long experience of prostate cancer recommend it. However, its validation is tempered by two complications; first, no one knows why or how it works; and second, it appears to work for only 70% of cases. Some patients show no improvement at all. Studies have shown that PC Spes lowers PSA, but crucially, no formal scientific research has proved how it works and why it only works on a proportion of cases.
But for thousands of men it is, they believe, the sole reason they are alive. It is not scientific studies that drive these men to shell out £300 for a month's supply. It is the stories of men like my father whose lives have been transformed.
For the time being, however, it seems there is nothing to be done, and that no one will help while the bureaucratic wheels grind. Seeing my father's condition deteriorate each day is difficult to bear, and it is hard not to hold the FDA responsible. While they have a responsibility to make sure that people know what they are taking, surely they don't have the right to prevent someone taking what they believe to be a cure, particularly in life-or-death situations such as this? I think my father might be willing to risk the odd glass of warfarin at this point.
That said, it has been five months since my father enjoyed a reliable supply of PC Spes, and he is desperately ill now. In our hearts we know his condition is probably beyond hope - even the hope provided by PC Spes. Men in this advanced stage of prostate cancer often experience disintegration of the spine due to secondary bone cancer and that is a constant fear. As I write this, my father's bones are holding out, as is his razor-sharp mind, but his raging PSA, now in the hundreds, is ravaging the rest of his body, leaving him unable to eat or walk.
So perhaps there is nothing to be done now. But it is with a heavy heart that I imagine all those other men in my father's situation who might have some good time left, but for the want of a simple herbal remedy.
