Well done to everyone who has generated the interest in the NICE decision so far.
In case this would help anyone else I have done a draft email and letter below with lots of links (to the Petition, template letters, press article) and references the Early Day Motion. I will be sending this to all my contacts.
John
EMAIL TEXT STARTS HERE - FILL YOUR NAME IN WHERE IT SAYS "<YOUR NAME>"
I would like to ask for your help.
This is the first time I have asked anyone to write to their local MP. I've suggested a draft wording, below, if you would like to write.
For the sake of people who could, like me, still be alive years after receiving a diagnosis of leukaemia, I am asking for your support.
More especially, I am asking on behalf of the families who have a parent with this disease and will now be denied treatment.
NICE is withdrawing approval of two second generation drugs that are currently prescribed to people who have chronic myeloid leukaemia (CML) for whom treatment with the first generation drug hasn't worked. The second generation drugs offer indefinite survival with a high quality of life (it's just a daily pill), allowing many of those treated to continue as working productive members of society.
People become CML sufferers at any age in adult life. About 250 people a year will need this treatment in England, Wales and Northern Ireland. I personally know another CML sufferer who is a mother of 4 children, her youngest is 4. The first generation drug has just stopped worked for her and she will now need a second generation drug.
If this decision goes ahead, England will be the only country in Western Europe that does not provide these drugs to CML sufferers. People who come to need them after the decision will face a life expectancy of months, their life expectancy with the drugs would in 80% of cases be their natural life span.
The options will be simple, if you need the drugs: you will have to move to Scotland, or another EU state, or hope you can find a matching bone marrow donor for a transplant (an operation which costs, on my estimate, £300,000 and has a success rate of between 50% and 75%).
The reason given by NICE for the decision is that clinical studies of the effectiveness of these drugs have not achieved the level of studies on other drugs they approve, which are given to populations of tens of thousands of people - so called "gold standard" studies. This ignores the fact that it will never be possible to conduct gold standard studies on people who are being treated with second generation drugs for CML there just aren't enough of them in the whole world!
While everyone recognises that funding for treatments cannot be unlimited, NICE seem to have applied no rational thought to this decision. They do not cite the usual measure of "value" of a treatment that NICE has applied previously (the "QUALY" - see explanation). Could it be that one reason is this treatment inconveniently scores highly on that measure? The Government's recently announced Cancer Drugs Fund, to which anyone who needs drug treatment for cancer in theory can apply is, unfortunately, wholly inadequately funded.
NICE appears to be picking on a small group of sufferers to deny treatment to in the hope of setting a precedent while it and the Government are dodging proper public debate about the way in which treatment costs will be cut.
You can read a full press report on this here. You can easily find your local MP's details here. You can also sign an on-line petition. There is an Early Day Motion in Parliament (No 1831 "NICE REVIEW OF CANCER DRUGS FOR THE TREATMENT OF CHRONIC MYELOID LEUKAEMIA"), if you write in time (before the motion is timed out) please urge your MP to sign it.
Thank you for your time reading this. I hope you will be supporting the attempt to have this decision questioned and some proper debate about the funding of advanced treatments that restore full life to CML sufferers in other European countries.
Best regards
<YOUR NAME>
DRAFT LETTER/EMAIL TO MP
There are 4 different templates for letters available for download from the CML Support web site
Dear <MP name>
NICE decision on second generation leukaemia drugs
I am writing to ask you to raise urgently with government the issue of NICE's recent decision to withdraw approval for effective second generation drugs for chronic myeloid leukaemia (CML) which have been available to patients in England, Wales and Northern Ireland for some years.
NICE have failed to give a rational reason for their decision. In stead they state that studies have not achieved the same standard as mass drug treatment evaluations on many thousands of people. These CML drugs are only needed by a few hundred people every year and there will, therefore, never be studies of many thousands.
These drugs are internationally acknowledged by expert clinicians and independent research to be very effective at arresting CML and restore full life expectancy to people who would otherwise die within a year or two.
We all understand the need to control increasing costs of treatment, but a decision by a body such as NICE, based on an inaccurate assessment of the evidence, is a disgrace to our democracy. If it proceeds, we will be the only country in Western Europe denying CML sufferers treatment that offers a full life expectancy.
[I want to urge you to sign Early Day Motion 1831 "NICE REVIEW OF CANCER DRUGS FOR THE TREATMENT OF CHRONIC MYELOID LEUKAEMIA"]
<sign>
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