Talking Politics and Leukaemia: Lobbying Parliament

The drugs I take everyday keep me alive. I have Chronic Myeloid Leukaemia (CML) and my 100mg dose of a drug called dasatinib has put the cancer into remission. I’m 36 now and it’s been a 4 year journey, I work full-time, don’t consider myself ‘sick’ and am very, very lucky. The reason I consider myself lucky is because if I had been diagnosed today I would have less drugs available to me than there were available to me 4 years ago.

I started my treatment on a drug called imatinib, hailed as the “magic bullet” to cure cancer by Time magazine back in 2001. I soon moved to a high dose of imatinib because it wasn’t working well enough and after 3 years my consultant decided to move me onto dasatinib, a second generation of treatment which has evidently worked very well.

When reviewing treatment for a resistance in standard dose imatinib earlier this year the National Institute for Health and Clinical Excellence (NICE), a special health authority of the English National Health Service (NHS), rejected the use of dasatinib and higher dose imatinib because it considered them not to be cost-effective. It did however approve the use of nilotinib, another second generation drug, because the manufacturer offered a price discount to the NHS called a patient access scheme. Upon diagnosis this would have left me the choice of just one drug before a risky bone marrow transplant was considered. At the time I had the choice of two drugs and high dosage imatinib. I’d consider this a step backwards in treating CML.

Not content with restricting the choice of second line therapy NICE are currently reviewing first line therapy. They will be making recommendations on which, if any, drugs are to be made available on the NHS for first line use in CML. In the very worst case scenario they may not approve any, although I have been told this is very unlikely. It is likely that they will once again restrict access to these life-saving drugs by approving just one and basing their decision on cost rather than effectiveness.

It is important to consider that these drugs don’t buy a few months or a few years they buy your life back! Thanks to these drugs it is more than likely that I will die from something other than Leukaemia. The drugs I take that target cancer cells and shut them down are, what I believe, the start of the elusive cure for cancer. Yet a government body, which is part of the NHS and paid for by the taxpayer is trying to stop that progress in the name of cost effectiveness.

So last week I visited the Houses of Parliament. Mission objective: to take part in a CML Patient Lobby. The idea being to have a single day when patients could meet respective MPs, and ask them to take action by urging NICE to give positive guidance to all three drugs being appraised for first line treatment: nilotinib, standard dose imatinib, and dasatinib.

With support from Leukaemia Care, a charity based in Worcester, I went with a high moral stance and a very personal story to tell. It would clearly be best for all CML patients and families for their doctors to have the widest choice of treatments possible, in case of any intolerance and/or resistance by individuals to any one or more of these drugs. Hence the lobby wanted them all to be made available one way or another.

My fellow CML patients who also attended the lobby had travelled in from far and wide and included a gentleman who was in his 80s and had Leukaemia for 18 years! Only thanks to the wide range of treatment was he still active and enjoying life. We had all arranged private appointments with our local MPs but managed group discussions with Alan Meale MP, who was the sponsor of an Early Day Motion (#1831), and Alex Cunningham MP who is a member of the All-Party Parliamentary Group on Cancer. Both listened intently and agreed that they would look into ways to support us by writing to NICE and the pharmaceutical companies to ask for better patient access schemes. We also had a chance encounter with Lord Maginnis of Drumglass who was concerned about our case and told us he would be happy for us to contact him with a view to getting a question raised in the House of Lords.

My local MP Mark Garnier has been supportive in the past by writing letters to the Department of Health when NICE were debating second line therapy. Sadly all we ever got back were template letters from the offices of Earl Howe (Parliamentary Under Secretary of State with special responsibility for NICE) and Andrew Lansley MP (Secretary of State for Health). From their responses it felt that they were simply washing their hands of the situation. The population of CML patients who received these template letters all felt that NICE was simply a body set up by the Government to make unpopular decisions. Sadly even the Early Day Motion set up to draw attention to the issue was politicised. Out of the 43 MP signatures 27 were Labour, 5 were Liberal Democrats and 2 were Conservatives, the remaining 9 were made up from other parties.

Today Mark was really interested in finding out more about our issues and helping. He listened intently and asked questions. He was particularly concerned about the process NICE uses to make decisions. As CML is particularly rare, only around 550 people are diagnosed each year with it and the median age at diagnosis is around 60. So harvesting any research is hard because there just isn’t the number of people with the disease. The committee at NICE insist on a preference for a gold standard clinical trial model to make a decision, even though such a model is undeliverable in this case. NICE does not deny that these drugs are more clinically effective than their predecessors but their issue is that there is a paucity of acceptable data from international clinical trials and this serves to inhibit the appraisal committee’s confidence in giving a positive recommendation. In other words the drugs work but because NICE doesn’t have enough people to do a clinical trial to their gold standard then they won’t recommend.

Mark agreed that if this was the case it was concerning and he would be supportive of a letter to NICE to question their model. He also agreed to support my approaches to pharmaceutical companies asking them to offer patient access schemes and therefore reduce the cost of the drugs to the NHS. Finally he suggested we could ask written Parliamentary Question through him to get answers to questions that were previously ignored. In all he couldn’t have been more helpful and supportive.

The day was a great success. I think the group made a slight ripple in a rather big pond and we certainly gained some fantastic support from the people who run our country. I fear that this is just the start of the battle and although my drugs are unaffected by any new decisions this fight is for the people diagnosed today, tomorrow or next year.

Andrew Lansley promised a reformed NHS that would give patients, “real choice for the first time.” His promises have a hollow ring at the moment. The priority appears to be restricted choice and penny-pinching. NICE claims to be an organisation that is responsible for providing national guidance on promoting good health and preventing and treating ill health. Professor John Goodman, a world authority on Chronic Myeloid Leukaemia, stated when speaking of the NICE committee and their draft recommendation in a recent interview, “There must be a reason why intelligent people produce something that is crassly stupid.”

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