'I want to live as long as I can'
By Gill Higgins, BBC health correspondent, Dec 8, 2005
These are precious times for Colin Graves.
He has a type of lung cancer called mesothelioma. And he may only have a few months to live.
"You want to see as much of your children as you can, to be with your family as long as you can.
"I'm going to miss all that."
But a drug called Alimta might help him live a bit longer.
"To me they're saying life has so much cost
and, if you go over that, it's not worth it." -
It is given to patients in some areas like London. But Colin has been told he cannot get it in Teesside even though the North East has one of the highest rates of this type of cancer.
Mesothelioma is caused by asbestos, which many people were exposed to when the shipbuilding and steel industries were thriving.
But the health trusts in the region have joined together and decided they cannot justify funding this drug.
Dr John Docherty of Langbaurgh Primary Care Trust, which covers the area where Colin Graves lives, said: "Added to existing treatment it prolongs life by between four and 16 weeks.
"I accept for partners and families this is a big benefit, but it does not cure mesothelioma."
This is a decision Colin finds hard to accept.
"It is wrong to keep denying them."
He says: "I'm angry, angry - and upset.
"To me they're saying life has so much cost and, if you go over that, it's not worth it."
The National Institute for Health and Clinical Excellence (NICE) was set up to end the patchy availability of drugs. It makes decisions which apply to the whole NHS in England and Wales.
But the process can take years.
There have already been concerns around the availability of the breast cancer drug herceptin.
NICE argues that in that instance there is nothing it can do, as the drug does not have a European licence for use in the treatment of early stage breast cancer.
But Herceptin is just one high profile example. NICE's decisions affect the availability of dozens of cancer drugs, with a direct impact for thousands of patients.
Jeremy Steele, a cancer specialist and chairman of Mesothelioma UK, says: "Advances are spectacular and not being able to use them is disappointing and sad, particularly for patients.
"It is wrong to keep denying them for organisational reasons."
But Colin is being denied treatment.
If he lives until next summer, it is likely he would get Alimta once it has been nationally approved.
But right now, it is out of reach.