One decision I took early in my management career was to take everything that came to me on a case-by-case basis. This was, in part, because when I was being managed by other people I constantly ran into useless 'company policies' that were used to frustrate me.
These various policies might have appeared practical in a printed rulebook but life is not black and white and people are not logical. "No reason, just policy," was no way to handle disputes for example when balance and fairness were needed to maintain morale and a positive working environment.
To make the judgements and decisions necessary for this required a clear mind, human empathy and patience. If bad blood existed between two parties I brought the three of us together and both parties had the opportunity to vent their rage uninterrupted. Then the points raised by both were debated openly by all three and stubborn positions eased gently closer to each other. Compromises were found and nothing was agreed until everything was agreed.
In this context the potentially life-saving cystic fibrosis drug, Orkambi is in the news because the HSE is saying that €160,000 a year is too expensive for sufferers and so, 'Not fit for purpose.' I myself was once told by a pompous bastard that I was not fit for purpose so this one caught my eye. Long suffering patients who have used this Orkambi pill have reported that it was the first year of their lives that they spent outside hospital. That alone must have saved the HSE fortune.
The crux of the matter though is that The National Centre for Pharmacoeconomics (NCPE) has said the drug, at a price of €160,000 per year is not “cost effective”. That depends on who you're talking about surely. The name of this outfit suggest they concern themselves with the economics of medicine so they monitor the price of pharmaceutical products to the State. If they are looking at a spreadsheet that shows the relative prices of various pills on an annualized basis then I have no doubt Orkambi is showing up in red near the top.
The Journal has the full story here, but reading between the lines, the problem with Orkambi for the pen pushers at the NCPE is that this pill is a potentially life-changing drug, not a life-SAVING drug. Let's call a spade a spade here. The miserable long suffering cystic fibrosis patient in the hospital bed, day in, day out, is unlikely to die unexpectedly where they are. Deaths are the big statistic you see. Cystic fibrosis is a terminal condition and what Orkambi offers is a few short years of comparative quality living. I mean, if you had your choice between a year in hospital or a year at home with your family and a miracle tablet, which would you choose?
Quality of life means different things to different people, depending on their personal circumstances. My guess is that the boys and girls working at the NCPE have a cushy number and a decent quality of life but the CF victim is in hell all of the time as are their families. What then is the price of mercy in a civilized society? "The definition from the Health Information and Quality Authority (HIQA) of a QALY is: “A measure of an individual’s length of life that has been adjusted for the health-related quality of life,” the Journal tells us. Essentially, a QALY equates to one year in good health. Lines like that remind me of the policies I remember written in company rulebooks.
Our Constitution states that all citizens will be treated equally but a wealthy man could afford Orkambi for a CF sufferer in their own family while the less well-off could not. And what about the multi-national Pharmaceutical Companies? These are the most profitable and wealthy companies on earth and they actually profess to be 'carers.' How then when they know there are CF sufferers who badly need Orkambi but can't afford it, do they not simply give it to these people on a case-by-case basis?" That would be a demonstration of genuine caring in my book. It wouldn't cost these big boys much except perhaps a single production run and the few chemicals needed to mix the potion.
While I'm on about the Pharmaceutical Companies, we keep hearing how drugs on sale here cost multiples of what they cost almost anywhere else. Tablets over the counter in Belfast are a third of the price paid in Dublin. Our schoolboy Minister of Health mumbled something about taking on the Pharmas but that story quickly trickled away after the headline. My suspicion is that he prays at their alter each morning and then gets about their work for the day. Fatso Reilly had no appetite for locking horns with Pharmaceutical Companies either and Leo didn't even go there. So there is no reason the Pharma boys couldn't double the price of Orkambi and tell the rest of us to fuck off if we don't like it.
If I applied my management style to this problem I would sit with someone at the top from the NCPE and the head Druglord responsible for Orkambi. I would ease them kicking and screaming closer to each other's price position over many hours until an affordable solution for Orkambi could be reached that offered a win-win for both parties and no loss of face. Once signed and sealed, I'd kick the two of them out for being thick ignorant bastards.
I'd have no real reason for doing so you understand, just policy!