I am 45 years old, and suffering from a very rare, very aggressive cancer. At the moment, I am in hospital, awaiting a second lot of surgery to repair bones that the cancer has eaten away since appearing in them last December. Not very long ago.
A week ago my upper leg broke from putting weight on it for a moment. That is how it is for me right now, for me, for my family, and my children, aged 9 to 18.
Last year there was a lot of publicity regarding the approval of the drug, Herceptin, on the Pharmaceutical Benefit Scheme for people with early breast cancer that tested positive for a particular protein, HER 2+ or HER 3+. My primary cancer, a salivary duct carcinoma (SDC), also contains HER 3+. In fact, HER 3+ is considerably more common in SDC than in breast cancer. However, the very small numbers of people with SDC has meant that it is not possible to provide the kind of evidence for this condition that is available for breast cancer.
There is a current study underway in the US for Herceptin, but it is under the blanket of salivary gland cancer in general, with only a few cases of the much rarer and more aggressive ductal form. Preliminary results show that Herceptin is only effective in SDC and a few other very rare salivary gland cancers. The numbers involved are fewer than ten – but there is nothing else for those of us suffering from this condition.
My doctors are prepared to prescribe the drug for me on the basis of the evidence available. However, there is no PBS approval. This means the drug costs $2200 for the first dose, and $1100 a week thereafter. The recommendations from the research are that, if it stops progression of the disease, keep taking it.
Keep taking it.
I’m lucky. I have a superannuation payout that means I can keep taking it for a year. It’s an ironic position to be in. I’ll only run out of money if it works.
But the tragedy is, that this position exists at all.
I am grateful that I live in a country with such an excellent standard of medical care, and so much support for people suffering from so many conditions. Apart from my own loss of income from my inability to work, my family has had very little financial hardship caused by my illness.
I am grateful that the drug companies do all this research and discover all these obscure chemical combinations that offer hope to so many who would have had no hope before.
But I do ask, why? Why should it cost so very, very much for this hope? What if I didn’t have the money? What if I didn’t have the skills to try to do something about it?
Last year the New York Times interviewed Roche, who manufacture Herceptin and a range of other anti-cancer drugs, and asked them about the cost. Roche apparently no longer use the cost of research as their primary argument for the high cost. Rather, they stated that the cost was a result of ‘market forces’. I find that very difficult to accept. They also stated that they would hate to think that anyone would not have access to any of their drugs because of the cost. I find that very difficult to believe.
I have applied to Australian politicians for help, and I am hopeful of the outcome. My father approached Roche in Australia, who recommended the political path. I am hopeful also in that, because my condition is so rare, it is not a major decision financially from a governmental point of view, in the way that it was for early breast cancer.
But still I ask, why is it so?
Is there not some way that these companies and governments can negotiate to share the burden of costs, and still reap some benefits? Governments cannot pour their entire resources into health costs of this kind of magnitude. And I’m lucky I’m Australian. If I was American, I’d be much worse off.
Herceptin is not the only drug that costs this kind of money. Roche’s new anti-bowel cancer drug costs even more. Where is the money to come from? What are we to do, with cancer spreading amongst us all the time? Yes, many people recover from it now because of these wonder drugs – but how long can we afford, individually or collectively, to pay for their recovery?
Living is priceless. Myself, my family, my loving supporters will pay anything they can for any hope for me.
I hope to live long enough and be healthy enough to continue to be involved somehow in making treatment more accessible. Public awareness is the first step, I believe. Often I hear people say ‘the government should pay’ – but look how much we are asking them to pay. Let’s try to find some other way. I’ll keep thinking on it, as I watch Darwin storm clouds pass my hospital window.