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Maureen Lipman with with her husband Jack Rosenthal, who died from myeloma in 2004 |
Condemned to die... the patients being refused a life-saving cancer treatment drug
At about £20,000 for a six-month course, Revlimid is proving too steep for the government
“WE really are being condemned to die.”
It might sound melodramatic but not if you hear the story of how David, a man in his 60s from Kentish Town, has been told that a drug which has given him hope in his battle against myeloma, one of the most aggressive forms of blood cancer, may in the future prove too expensive to provide.
For him, Revlimid, a drug given to him at the Royal Free Hospital in Hampstead on a trial basis for the past three months has, put simply and his own words, “saved his life”. The experts agree the new treatment has had a remarkable effect in fighting a disease that medics have historically struggled to treat.
Actress Maureen Lipman described recently how her husband Jack Rosenthal, the scriptwriter who succumbed to myeloma in 2004, had experienced “a maelstrom of pain and confusion”.
Now a patron of the charity Myeloma UK, she said: “I want to help raise awareness of the disease, treatment and research, in the hope of finding a permanent cure. I don’t want anybody to go through what we have gone through because of this little known and violent disease.”
If a cure is ever to be uncovered, experts at the Royal Free suggested this week, it could be somewhere in the development of Revlimid.
The worry among medics, however, is that they might not get the chance to use it for much longer. Trials involving around 150 patients are due to run out at Christmas and there is no guarantee that further use will be funded.
As Dr Atul Mehta, a leading blood specialist running the tests, tactfully said: “It will put patients in a difficult position.”
While leukaemia has entered the public consciousness as a notorious killer cancer, awareness of myeloma is not so great. Sufferers face abnormal bruising, sharp pains in their ribs and back, and fatigue. Until the development of new drugs, patients underwent chemotherapy which only had a limited impact. David did not want his full name in print but understandably is anxious to see the use of Revlimid expanded as soon as possible.
“There is no doubt that it has saved my life, but the uncertainly over whether or not I will continue to get Revlimid treatment only adds to my illness, stress and anxiety,” he said. “The effect this is also having on my family is simply devastating. It’s hard to accept.”
It is the cruellest of predicaments as the patients are aware that the drug has been licensed in places like the United States.
National guidance surrounding drug trials in hospitals state patients should not have their hopes raised unfairly and should not expect the drug to automatically be funded when the test expires.
Yet, when somebody is suffering from one of the most unforgiving of diseases imaginable, it takes the most clinical of financial minds not to see how hopes will inevitably be raised by the apparent qualities of Revlimid.
The drug is not too expensive in the eyes of Royal Free doctors. They have just one objective: keeping their patients alive.
And it may not necessarily be too expensive for Camden’s Primary Care Trust, the body that passports funding through to hospitals, if it was given the chance to evaluate the worth of the drug.
But, at around £20,000 for a six-month course per patient, Revlimid is, at this stage at least, proving too steep for the government.
Ministers want more proof of its effectiveness before releasing it for general use but the bottom line is the cost.
The National Institute for Clinical Excellence (NICE) has the power to put Revlimid into regular use but it could be at least a year until it is finally approved. If you are suffering from myeloma, you haven’t got so long to wait.
“I’m now told that this process could go on for years,” added David.
“Since Revlimid has not yet been approved, my local PCT is under no obligation to fund the drug. It really makes me feel that my life is worth nothing.
“As many patients in my position say we really are being condemned to die. It just doesn’t make sense to allow this unfair and inhuman situation to continue.”
It is not a problem just facing Camden residents. In fact, the location of two teaching hospitals in the borough – the Royal Free and University College London have both been part of the first trials – means that the the drug has at least been available on a temporary basis.
Dr Mehta said: “This is potentially a good news story. Here is a drug that patients have responded well to, patients who in the past have just been given chemotherapy. NICE are very busy and it could take a year before they look at Revlimid. A year is a long time if you are suffering from myeloma. This is a form of cancer and is a very serious issue.”
Doctors are always more cautious than headline writers and you won’t find Dr Mehta using terms like ‘wonder drug’.
But he said: “The results have largely been positive.
“If you were to say that this was the answer to it all, a life-saving drug then I would say that you were going too far but the results we have seen show that patients have responded well. It could be a very important advance. But after the six-month trial has finished, there is no guarantee that our patients will be able to get Revlimid.”
A Camden PCT spokeswoman said: “Camden Primary Care Trust has not been approached by UCLH nor the Royal Free Hospital with regard to this drug trial. There is standard practice in the NHS that governs drug trials. Best practice is that all patients participating in a clinical trial must be made aware that there is no guarantee that the medicine will be continued at the end of the trial, irrespective of results; patient expectations should not be raised that when the trial ends the treatment would continue with NHS funding. Nationally, PCTs will fund drugs that are appraised and approved by NICE, which will look at all the evidence and a wide number of factors including cost effectiveness and affordability to the NHS.” |
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