Malcolm Cole is a Myeloma sufferer, and is being kept alive by a drug called Lenalidomide.
A report published in the Lancet Oncology on Monday proposes expensive drugs like these are not cost effective. To get this treatment he had to fight a number of government authorities and the health service. He told Huffington Post UK of his experiences.
"I’ve been taking these drugs for the last five years and the drug that I’m on at the moment is keeping me alive, keeping me fit, and I am enjoying my life. The National Institute for Health and Clinical Excellence (NICE) estimated in 2007 that even with these drugs I only had six months left to live.
"Before I took the drugs I was dying. I had Myeloma, [cancer of white blood cells] diagnosed 1993, and by 1999 was growing aggressively. However I am fortunate compared to most Myeloma patients as the only thing wrong with me is that if I don’t take the drugs then I will become ill and die with pneumonia within a month or two as my immune system will collapse. Other than that I am fit. I can run, I can walk, I can drive the car: I have no problems like that.
"I am 73 now and I’ve had a much better life than I would have done without these new drugs. They are expensive: the one that I have costs £4,200 a month.
"I had to fight for those drugs and I had to fight NICE, I had to fight the Primary Care Trust [PCT], I had to fight the government, I had to fight everybody.
"My fight with the PCT was absolutely ghastly, absolutely dreadful, and it probably did more damage to me than anything else. There was so much stress involved, between myself, my family and everybody else close to me. It hurt my wife, as much as it hurt me: it’s the whole family that’s affected. Patients have to go to war.
"More often than not there just isn’t time, they die because of lack of time to fight for the drugs. I will carry it with me to my grave that I had to fight like that.
"It is a dreadful situation to be in. What is so hurtful is that you know at the end it is a manager who is going to make the decision. You know that they don’t understand. I wanted a doctor to make it, a doctor who knows me.
"Unfortunately the same thing applies to NICE. They have standard methods of doing things which work fine when they’ve got thousands of patients but when they’ve only got 300, as in my case, they cant possibly tell by putting their averages out.
"These drugs are refused based on inaccurate averages and statistics. NICE say on average quality of life is such and such, so they wont give it. But quality of life varies by individual.
"You attempt to justify your quality of life and they take no notice. The PCT blame NICE and say that NICE say its not a special case. Then you get the doctor to write in and saying it is a special case, that your quality of life is very good and then they just say no it isn’t again.
"After that I knew I had a war to fight with the PCT and I started fighting that war immediately.
"I sent letters to the papers and to politicians. David Cameron happened to be my local MP, which helped. I thank him when I write to him. But it didn’t solve the problem.
"The first time I lost the battle, but luckily one of the doctors managed to get me a trial down at the Royal Marsden Hospital in London so I was kept alive.
I could do it because I was well, which in itself indicates my quality of life must be sufficiently high but its a dreadful way of doing it.
"One former nurse who worked for the PCT said to me directly: 'We can spend that money much better on palliative care for people who need ordinary medicines like aspirin so we cant afford to spend it on you'. I thought that was appalling.
"It’s ridiculous that people are saying that more money should be spent on palliative care. The reason for that is that palliative care is by its nature a 14 day affair. I say 14 days because I am in contact with our local hospice and they reckon that is the time that an ordinary person spends there in palliative care.
"The problem was finally solved when the charity that looks after me wrote the most superb letter about me and what should be done. The following week the PCT came back and said that they believed the doctor and thought I had got a high quality of life. They weren’t going to accept that it was a charity that did it, but they had been refusing the doctors views up until then.
"Because I just kept on and on and on, they gave in and said they would give me a cycle and see it what it would do. They gave me one cycle and it worked very well. It was a war until such time as I finally won and got the drugs I needed.
"The drugs have had some side effects. It triggered an epileptic fit although it didn't cause it. However by that time the cancer was already in remission and remained in remission for a year and a half.
"Similarly my gall bladder packed up, but that might be pure chance and it might be age. It couldn’t stand up to the additional strain of having those drugs in my body. I’ve been on the drugs for two years now and they are keeping me alive.
"If someone was in a similar situation to myself before I had these drugs I would say to them
if you need the drugs fight for it. You shouldn’t have to fight for it, you’ve got enough stress on you knowing that you are going to die without them, but fight for it."
NICE recommended Lenalidomide (Malcolm's drug) for use on the NHS in June 2009. The drug is now available on the NHS.