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Fran was diagnosed with chronic myeloid leukaemia (CML) in 2015. Read her story and why she’s joining the campaign.
In early 2015, I started feeling very tired and dizzy, couldn’t shake off a cold, and my feet were like blocks of ice. I didn’t really think it was anything serious, but after a few weeks one of my friends forced me to see my GP “just to be on the safe side” – and I’m so glad he did! My GP arranged a blood test and a couple of days later he called me to say that my platelets were a bit high and that he’d made an appointment for me to see a haematologist.
When I met the haematologist, he made it clear how serious the problem was – my GP’s description of my platelets being “a bit high” was quite an understatement, as it turned out they were at nearly 3,200 (normal range is 150-400), one of the highest my consultant had ever seen! He explained that he couldn’t give a definite diagnosis until I’d had a bone marrow biopsy, but he was “80% confident” that it would be essential thrombocythaemia (ET), a form of cancer which leads to overproduction of platelets.
My biopsy results revealed that I actually had an unusual form of chronic myeloid leukaemia (CML). But my consultant’s very next words were that it’s a treatable disease, and, while it can’t be cured, I can still expect a near-normal length life with the help of daily chemotherapy tablets.
The next step was to decide which medication to go for. My consultant explained that there were a couple of standard options, plus the opportunity to go on a clinical trial to test a drug called bosutinib. It’s usually only used when the more common drugs stop working, but this trial is to see how it works as first line treatment. He explained that the two standard drugs are freely available on the NHS, whereas bosutinib is only currently used in special cases when the others stop working – and funding for these special cases is not guaranteed. To me it seemed like an obvious choice - by going for the trial, I'd have access to an extra option, so if it stopped working I'd still have more chance of finding a successful treatment than most people. Also, the drugs company would pay for the medication for the five years of the trial, and probably beyond, so even if the NHS wouldn't pay for it I'd still have access.
On the whole, the future is looking good now. My treatment is working well, the side effects are manageable, and although life hasn’t gone exactly to plan there’s still a lot to look forward to! At times, though, I can’t help but feel a nagging worry about things beyond my control – I could develop a mutation at any point which would mean needing to change medication. There are four other options available (imatinib, nilotinib, ponatinib and dasatinib), so in theory this fear of a mutation is unnecessary as the chances are that one of the other four would work perfectly well and continue to keep my leukaemia at a safe level. However, both ponatinib and dasatinib are at risk of being removed from the Cancer Drugs Fund’s list of funded drugs, thereby halving my options if bosutinib stops working.
While I appreciate that funding isn’t infinite, and that a line must be drawn somewhere, the reasoning behind the CDF’s proposed cuts is utterly incomprehensible to me. Yes, the drugs are expensive, but there are so few people taking them that in the grand scheme of things the cost is negligible when put side-by-side with the amount spent (quite rightly) on drugs for more common cancers and other illnesses such as diabetes and heart disease. What right has the CDF to put a price on my life?
What I find particularly frustrating about the CDF is that the treatment options vary according to which part of the UK a patient lives in. Those in Scotland and Wales have greater access than those in England, which means some people are forced to consider uprooting their entire families and moving across the country, all because one funding authority is more reasonable than another. I simply can’t understand how our possible treatments can depend solely on where we live, how our chance of a life relies on having the right postcode.
I try not to think about my own future too often - there's every chance that bosutinib will continue to work very effectively so there's no point worrying needlessly. I am, however, deeply concerned about the future of other CML patients, and indeed those with any rarer cancer. I realise that I was extremely lucky to be diagnosed at a time when such a trial was available to me, but many diagnosed since then will not have had that opportunity.
NICE may argue that there isn't sufficient data to prove the effectiveness of these more expensive drugs, but that absolutely does not mean that they don't work; it just means that there aren't many people in the world with the right illness who can try them out.
If people die from cancer because they are resistant to all the known treatment options, that's very sad but it’s nobody's fault. If, on the other hand, they die because some anonymous panel on a funding body decides that they aren't worth the cost of a more expensive treatment, then that is both tragic and immoral.
I believe it is no exaggeration to say that Leukaemia CARE's Cancer Lottery campaign is a matter of life and death. I am deeply grateful to all of those working to give patients with rarer cancers a voice where it matters, and I'm confident that with public support those in power will be forced to reexamine the proposed policy changes so that we can have more chance of a future.