NICE and Leukaemia drugs

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