A PROPOSAL by the medicines watchdog to oppose innovative therapy options for people with a form of leukaemia will “shorten the lives of patients”.

Steven Davies, 54, of Boreham Holt, Borehamwood, was diagnosed with chronic myeloid leukaemia (CML) in 2004, the result of an abnormality in the bone marrow, which causes a massive increase in the number of white blood cells.

The National Institute for Health and Clinical Excellence (NICE) announced on May 5 a provisional decision not to recommend a new generation of drugs for the treatment of CML that is resistant to the standard prescribed medicine.

Mr Davies says it means patients like himself, who suffer side effects such as eye-bleeds, weight gain, joint pain and exhaustion from imatanib, will not be able to try different medications.

He said: “It's been proven that people who move onto the second generation of drugs survive longer. Why are we being denied drugs that could prolong our lives?

“We're not talking about hundreds of thousands of people here, but why should a couple of hundred people's lives be shortened because of a wrong decision by NICE?”

Mr Davies said the medical body would be leaving patients with “nasty” alternatives such as bone marrow transplants and older, less effective drugs.

He added: “What they are saying to people is take it or leave it.”

Mr Davies said his whole life had changed since he contracted the illness, forcing him to change his career from working in the fashion industry to become a driving instructor.

He said he tries not to let CML be an overriding factor in his life, despite three-hour fasts morning and night and immense tiredness due to his medication.

He was placed on a new drug called nilotinib around a year ago, but has unfortunately proved intolerant. He is eager to try an alternative called dastanib, but under the proposals this would not be possible.

The decision by the medical body would effectively freeze all patients on the medication they are currrently taking, and close off more powerful therapies to the 540 people who are diagnosed with CML each year.

Mr Davies said he felt NICE were playing God and taking a short-term financial view of the situation.

Mr Davies said: “If you're dying and a drug will improve your quality of life for three months they may prescribe it. But if it lasts too long, it costs too much. It means it's not down to whether the drugs work, but the money.

“We're always behind in this country. I've had the most wonderful treatment from the NHS. I've got the biggest praise for it, but something needs to be done about NICE.

“Look at the rate of take-up in other countrie. Why do we lag behind in so many appraisals of drugs that could help people with lots of different illnesses?”

The reason given by Andrew Dillon, chief executive of NICE, for the opposition of new therapies was: “The evidence for the effectiveness of dastanib, high-dose imatanib and nilotinib is very weak.

“When we recommend the use of very expensive treatments, we need to be confident that they bring sufficient additional benefit to justify their cost.”

The medicine watchdog says the more powerful dasatinib and nilotinib cost more than £30,000 per patient per year.

The proposal by NICE is open to public consultation, before a final decision is made in June.

Members of The CML Support Group, which provides advice and information for patients, are campaigning to try to overturn the plans. They are asking residents to sign an online petition and write to their MPs.

Sandy Craine, director of the group, said the news had been a crushing blow for patients who faced a “bleak therapeutic future” should the recommendation be confirmed.

She asked: “Will we see CML patients in England, Wales and Northern Ireland unable to join the citizens of Scotland and Western Europe in their right to access the best standards of healthcare possible?

“To remove the right to choose new therapies that show real clinical benefit will inevitably shorten lives and cause unnecessary distress to many.

“The CML Support Group urges the NICE appraisal committee to reconsider its preliminary decision and recommend that patients have the right to choose therapies that offer optimal clinical benefit, a reduction of side effects, improved quality of life and the best chance to live a full and normal life.”

A petition has gone live, along with letter templates for people to write to their MPs, at www.cmlsupport.org.uk