Well it looks like we’ll have to wait until Friday for the conclusion of the Wedding Daze trilogy. I don’t tend to type ahead – I’ve done it very occasionally but it doesn’t seen to work for me. So I sat down to do it when B went to work but intended get rid of some paperwork beforehand. While doing this I decided to watch Should I Test My Genes in BBC iplayer – a friend watched it last night on the TV and said it was interesting. I happened to google the writer as I thought Chris has told me he was a doctor but I wasn’t too sure about that. As it turned out that he was science writer Adam Wishart who was the responsible for the award winning documentary The Price of Life which was broadcast in 2009.
I had read about this in the Myeloma UK newsletter and it had been seen by the same friend at the time it was first broadcast. I however had never even felt the urge to see if it was still available online and now I’d just stumbled upon it. It’s about the approval by NICE (National Institute for Health and Clinical Excellence) of drugs for use by the NHS and features the assessment of Revlimid (Lenalidomide).
The interim decision made by NICE was that Revlimid would not be available because it was not cost effective at the price requested by Celgene and the Government does not allow NICE to negotiate price reductions with drug companies – well yes, that makes a whole lot of sense. However after a change in the rules the £30,000 per patient per annum cap was lifted for end of life drugs which applied because Revlimid was deemed as being for patients who hadn’t got long to live and I just loved the quote…
‘The question boils down to this – how much more valuable is one year of your life when it comes at the end of your life.’
Apparently for a myeloma patient needing Revlimid a month is worth 1.4 times that of a ‘regular’ patient.
Celgene had however helped out by offering the drug free for each patient after the NHS had paid for it for two years but even with this it came down to a nail biting finale (yes even though I knew the outcome and I’m not a nail biter I was almost sorry I’d cut them yesterday). The votes cast were nine for and nine against with the chairman making the casting vote – it was (obviously) approved.
I found the whole thing quite disturbing. My life is in the hands of my doctors and, although I ask questions, I trust them with it. However to think my life could at some point be in the hands of the NICE process was frightening. At the risk of being sued or making any dockers reading blush I will keep my more colourful comments to myself – although I didn’t before as evidenced when Bud felt the need to leave the comfort of the bed three times to come and check everything was okay – I don’t raise my voice or curse venomously often but he doesn’t like it when I do and you know – it’s not NICE!
Feresaknit's Blog 
Clearly the NICE people are not ‘nice’ and have not had to deal with the scary aspects of having MM – and it’s just a great pity that your colourful comments couldn’t be forwarded on to them!!!
Could you please email me the comments to make a docker blush, I need a few more phrases for when Mike relapses in 25 years time. (I’m determined to get at least 1 Silver Wedding Anniversary 😉 )
Yes, there is nothing quite like people in suits deciding whether to pay
for life saving meds or procedures for us. My husband’s sis is a match
for an allo transplant. Problem is, only some health insurance companies
will pay for it, and medicare(our national health ins. for the aged and disabled) absolutely refuses to pay for it. Tim should not be doing the work he does. He actually meets the requirements for permanent disability, and probably will have to go that route eventually. But then, his medical ins. won’t pay for an allo when he may need one. NOT NICE!!! and just one more constant worry we have to deal with.
Celgene are very clever cos they know there won’t be that many patients who will still need it after two years… cos the NHS will have only given it to the patients who have a less than 2-year life expectation. Or am I being cynical? MOI?!
Don’t know how you managed to watch it. I certainly couldn’t have.