For the past two weeks, there have been many opinions voiced about cancer treatment and the controversial Cancer Drugs Fund. Along with many friends from the Younger Breast Cancer Network and Breakthrough Breast Cancer, I have been waiting with dread for the announcement about which breast cancer drugs were to be delisted from the CDF which last year overspent its £200 million budget. We were delighted to see three drugs remain on the list, including what we regard as the wonder drug Kadcyla which has given women I know years of stable disease rather than the average figure of six months that is regularly quoted in the press. Three other drugs, including Halaven, have been de-listed based on a balance of cost versus effectiveness.
I have written before about how I have come through harsh chemotherapy treatment that left me too weak to stand. How for the past six years I have taken, and will continue to take tablets that suppress every bit of oestrogen from my body. This means that at 37, I am infertile and suffer the risk of bone breaks that might be more commonly associated with a woman in her seventies. For the past six years I have been living with stage IV breast cancer, a label commonly interchangeable in the recent news stories on the CDF with 'terminal cancer'. But I'm not sick in the conventional sense; I have no incapacitating side effects, and I work and exercise regularly. Inspired by a friend also living with stage IV breast cancer I made a New Year's resolution to enter my very first sprint triathlon this summer.
The news on New Year's Day did not share my positive resolve to continue living my life despite my cancer. On 1st January there was a widely reported story about former editor of the British Medical Journal Dr Richard Smith's opinion that cancer is a good way to die and that we should stop wasting money trying to delay death of already incurable patients. Earlier this week, Lord Darzi also expressed the opinion that rising spending on cancer treatment for those that can't be cured is a waste of money.
Having watched NICE (the National Institute for Clinical Excellence) reject at least seven new cancer drugs over the past few years based on cost, which the Cancer Drugs Fund then gave patients access to -- arguably a much needed safety net - I am in no doubt the system is flawed. But the drugs fund was only ever intended to be a temporary solution to the conundrum faced by NICE. In order to give patients quick access to drugs that could have a potentially transformative effect on life expectancy, NICE have needed to make decisions with limited data on how well these drugs can work. That the drugs fund has then removed any negotiating power the NHS may have had on price has created a perfect storm. No-one can argue that the NHS can go on absorbing steeply rising costs for cancer treatment. But this is not the debate I've observed over the past couple of weeks. What we are now seeing, perhaps as an unnerving symptom of the Coalition's austerity drive as it continues to look for ways to reduce the deficit, is a question mark over whether treating cancer patients who can't be cured is worth the money.
And herein lies the worst paradox of living with cancer. In order to live well, and many of us do, we need to be given the impetus to pick up the shattered pieces of the life that we lived before cancer. We need to rebuild, find a new normal. Create a new sense of self-esteem, bring confidence back to who we are. When that new normal comes, it's not the life we lived before we were told our cancer is incurable, but it can come close. Sometimes that can be for only a brief moment during a day spent feeling inconsolable; sometimes we can go for weeks, even months, free of the feeling that cancer has the upper hand. That freedom enables us to give more to our families, our communities; to be a part of the society from which this debate is in danger of marginalising us.
Lord Saatchi brought one of the most reasoned voices to the news about the Cancer Drugs Fund decision this week when he said "I don't want cancer patients to be told drugs can only stem their dying - that is a guarantee of failure. I want us to give people the opportunity to try to survive." When it has become common parlance to talk about cancer treatments and delaying death in the same breath, then the pledge this country has made to improve cancer survival rates has been undermined. Make no mistake, these drugs are about giving us the opportunity to live.