For anyone reading this from Added Value, you're probably thinking 'well a QALY is a Qualitative researcher, but why's Scotty spelled Quallie so oddly?' Aha – think again…
Thought you might be interested in seeing some of the things I get up to, now I move in this shadowy alternative world of Myeloma. So here's something I've put on my Myeloma Under50's website – 42 members now – that some of you might find interesting / discturbing /a pretty tough nut to crack!
Here goes:
Hi guys
Had an interesting day yesterday at a discussion group, hosted (and very well run) by the MMUK guys. Was attended by 11 MM people – 6 with the disease and 5 carers, intended to cover a cross section of age groups, both sexes, regions, stages / length of time with the disease, types of treatment had etc.
Main focus was for MMUK to better understand the perception of Myeloma people (patients and 'carers') around how NICE (the UK body that approves – or not – drugs) calculate the QALY (Quality Adjusted Life Year). Won't go into oodles of detail on it – but its the thing that determines which new to market drugs NICE invest in, ideally those which are under their £30k per QALY threshold. As you'll know, Revlimid (the new Myeloma drug which extends life a little) is over this, but did get approval.
Various exercises during the day to explore how we feel about the QALY system, how its measured etc.
Main take outs for me were:
1. NICE's assessments of Quality of Life ratings are based on general public opinions on what constitutes good or poor quality of life – ie the average person in the street (actually a survey of 3000)
2. The survey is very broad brush – has for example three levels of life quality e.g. 'no problems at all', 'some problems with mobility', 'can't get out of bed at all' – and doesn't take into account the many levels of ability within these bands.
3. Those of us who have disease/health problems see even impaired quality of life as still having a higher value than those who don't (Our views were then compared to the public's averages – shocking in some cases!) Eg 'If you have difficulty getting dressed / have moderate depression' our ratings of where this quality of life would sit on a scale of zero to 100 are anywhere between somewhat higher and WAY higher than the public perceptions. This means NICE sets its assumptions on what is poor quality of life at a lower level than it would do if more patient views were incorporated more prominently within it.
4. How the survey is conducted is not clear – ie how it's introduced to people, how they are asked to rank the different health scenarios, whether they are asked to think again once they've done it etc – all of which could impact hugely on the results ensuing. Ask any healthy person to rank a not great scenario and it can feel like you're asking them to imagine that situation actually happening to them- which will make them mark it very low, as they'd never want it to happen. One health scenario was ranked as minus 43 – which is just crazy!
5. The different 'value' of situations is a tricky one – for example, is one year lead at 100% health/ability better than 2 years at 50%, or 4 years at 25%? (I found this one terribly hard to answer – much as I don't want 4 years of 25% capability, I would still like to be alive…)
A pretty tough day actually – one minute a challenging mental conundrum with different arguments to consider – and the next second a terrible in your face reminder that this is how people determine what drugs any of us MM people may, or may not get and in which circumstances. Some for example are at first relapse only, others for second relapse – and there are lots of catches e.g. if you had one drug at Relapse 1 and it doesn't agree with you, even though there are several alternatives you're only allowed that first one or nothing (Imagaine going to get say contraception and being told you either have to stay on the one that makes you sick / wobbly / have hallucinations – or come off it and risk pregnancy, when you're obviously trying to avoid it. And at least in the world of contraception there are alternatives – not here. Nor is it going to impact on how soon or not you die!)
Was also somewhat mind blowing being in the room with a chap I've been 'following' (cyber stalker!) on the MMUK website, who had an unrelated donor transplant 2 years ago – something that may be needed for me. He's looking pretty frail – he's only 52 – thin with sagging trousers, not been allowed on holiday since the transplant… nor to have even one small alcoholic drink.. nor to go in his garage or to mow the lawn for fear of spores killing him…. nor to have his grandkids round at Xmas (one bonus then!)… nor to eat any shellfish, reheated food, soft cheeses, takeaways, unwashed salad, unboiled water etc etc… talk about a restricted lifestyle. And by his side his very supportive and lovely wife – whose life is also buggered by what's happened to him – makes me feel so bad for Hawksey – and all of you wonderful, ugly, brilliant, piss-taking lot – didn't mean to drag a single one of us into this mire. So sorry.
Was all a fairly major mindfuck – its like looking your own future in the face. More than scary. Blue bloody funk. But to revert to my point above – all that would be way better than being dead. Sorry to be so frank, but that's what Myeloma among all other shitty cancers brings into your life and your head. When's it my turn? How long have I got? Which bits of it will happen to me? Would a transplant be successful and buy me some more years, or kill me within weeks? If I had it, how much Graft vs Host disease will I get? And where in my body – my lungs? Liver? Kidneys? Skin? Will I try and get up one day and break my neck, or change gear and break my shoulderblade, pick something up and shatter 3 vertebrae – all of which have happened to others. Will I be able to leave the house again, go out, see people? Will we be able to keep the cats? How bad will the pain get? Will I be able to die at home?
Fuck a doodle – it's a toughie. And hopefully a long way off, but thats the hard thing – you just have no idea what and when anything will happen, Just the knowledge that unless you are the one in more than a million, it definitely will be back
Sorry AV – not done as much work this week as I should have done and I feel guilty about that too. Never have my targets looked so shite. But it's ever so hard when this circles round your brain like hungry fecking sharks and you've got no life-ring to save you.
And to top it all – a bloody post strike on my birthday. Even my cards are doomed! (Moment of light heartedness to close this poo-pants posting…!) S