A PATIENT with a rare form of leukaemia has hit out at the medicines watchdog for opposing innovative new drugs.

Steven Davies, of Boreham Holt, says a decision by The National Institute for Health and Clinical Excellence (NICE) will be a “nail in the coffin” for some people.

The driving instructor, who was diagnosed with chronic myeloid leukaemia (CML) in 2004, suffers painful side effects from his current medication.

The decision, coincidentally made on the seventh anniversary of his diagnosis - August 18 - means he will be unable to try new third-generation drugs.

Mr Davies said: “I’ve got terrible joint pain, which I have to undergo treatment for, because it looks like I’ve got some form of arthritis developing.

“I have headaches, muscle pains, a degree of weight gain, extreme tiredness and I have to keep taking anti-sickness medication. There a lot of side effects you’d rather not have if possible.

“I could survive at the moment, but I would like to survive with a better day-to-day living, where I don’t have pains.

“But for some people it will be a nail in the coffin if they are resistant to their drugs and have not got any alternative treatment. They could be starting to die, because they are waiting for drugs.”

Around 540 people are diagnosed with CML each year and of those approximately 35 per cent will prove to be either resistant or suffer side effects on first line drugs.

A second generation of more powerful drugs was also in doubt under the appraisal, but since the drug manufacturer agreed to lower the price, NICE has approved their use.

Mr Davies commented: “NICE make a lot of noise it’s all about the ethicality of it and they need more trials, but the moment a drug company moves on price strangely enough they agree to it. It’s not about how good it is for you, it’s all about money at the end of the day.”

His views are echoed by Sandy Craine, director of The CML Support Group, who said: “It seems to us that it is all to do with price.”

The average cost of annual treatment on third-generation drugs is around £30,000 per patient.

Ms Craine claims NICE gave no medical reasons to why they refused their use.

Members of the CML Support Group will meet this afternoon to discuss how they can appeal the decision.

However, Ms Craine said there was a “steep learning curve” to meet the bureaucracy of the appeal process.

She added: “It’s very tricky and quite complex. It’s not just a matter of saying this is unfair to most patients who need the other drugs. We can’t argue that case again, because they’ve already found against it.”

Instead the group, which is made up of volunteers, will need to study the details of how NICE reached its decision and find a ‘technical fault’ within the process.

The group have until September 2 to appeal.

Mr Davies added: “It’s not just for me, we’re doing it on behalf of all CML sufferers.”