Guest Post - NICE and Leukaemia Drugs

Guest Post by Terry Hickmott

www.leukaemianorthwales.org

In late 2004, and as is common with many cancers, I was diagnosed with 
Chronic Myeloid Leukaemia totally out of the blue. In the past this 
potentially fatal disease could only be treated with drugs like Interferon 
following a bone marrow transplant. The latter is only available to people 
within certain age groups and of course you need a marrow donor, either 
through family members or through a match on the Anthony Nolan Register. 

However, things have moved on, and in 2004 there was a drug called 
Imatinib, which is available on the NHS despite its enormous cost. This 
drug has been available for about 10 years now, and is very successful in 
keeping the disease ‘at bay’, as opposed to curing it. It is the NHS's 
first line of treatment for CML now.

Sadly a number of patients either fail to respond to Imatinib, or have a 
‘sub-optimal’ response to it. For them, over the last five years or so, 
two or three new drugs, working in a similar way to Imatinib, have been 
developed, and are showing great promise for those patients for whom 
Imatinib is not working as well as it might.

So we CML sufferers always had a fall-back. If things went wrong, there 
could be a drug you could swap to. And so the prospects for life 
expectancy for this potentially fatal illness are really, really good. So 
hats off to modern medicine and the NHS!

Until last week, when a letter dropped through my letterbox, and that of 
thousands of CML sufferers, telling us that these ‘fall-back’ drugs were 
not to be approved by NICE if Imatinib failed to work. The safety net 
suddenly disappeared.

The bottom line is this – if the first drug they put you on (eg Imatinib) 
fails to work, you will not be permitted to swap to one of the successor 
drugs, and instead you will instead be offered a combination of the ‘old 
type’ chemo drugs such as Interferon, which without the bone marrow 
transplant are pretty much useless.

Put another way, you go to your doctor with a headache and he prescribes 
paracetamol, which doesn’t work. You go back to him, and he says he can’t 
prescribe say Tramadol, because you’ve had your bite of the cherry and it 
didn’t work. So go home and put up with it, or in our case, go away and 
die.

I can only surmise that NICE are taking this stance because of the cost of 
the medication. Its efficacy is not in question. This isn’t a drug that 
extends life just for a few months – I’m over six years post-diagnosis, 
and the disease, whilst not cured, is under control. So are many many 
others.

NICE have launched a consultation which closes on 27th May 2011. We need 
as many people as possible to sign an on-line petition. Leukaemia can 
strike at any time in life – I was 47. Imatinib is a brilliant example of 
how in the 21st century cancer need not be a death sentence.

Please take the time to sign the petition. One day you might need these 
drugs and through government cuts you might not be able to get them!

http://www.gopetition.com/petitions/nice-i-don-t-think-so.html