Putting a price on someone’s life is and always will be a contentious issue, but in last night’s documentary, The Price of Life, filmmaker Adam Wishart guided us through the process of how NICE (National Institute for Health and Clinical Excellence) must do exactly that. And somewhat shockingly, we heard how NICE have a ceiling – or rather, had, before that ceiling increased recently – of £30,000 per person per extra year of life.
In this case, the subject of contention was the cancer drug Revlimid. It’s an expensive drug which, the manufacturer of it claims, can potentially increase the life expectancy of some patients by anything from months to a few years. For the individuals who would benefit from that, it is of course invaluable, however, with unprecedented access to the process of NICE’s decision making on whether to grant funding for this drug or not, we saw how difficult making the decision is.
However, one of the first things that occurred to me on hearing about the financial limits placed on the value of a year of life is that in the wake of the MPs expenses scandal being revealed in full, we know that millions of taxpayers’ pounds have been blithely paid out, seemingly without any checks on the validity of the claims, yet people were dying while awaiting approval by NICE for this drug. For some, approval came too late and one person who Wishart interviewed for the film, Julia, sadly died before she could take advantage of NICE’s ultimate decision to green light the drug.
Wishart approached the making of this film with sensitivity and a remarkable lack of bias; and he had every reason to be biased given that his own father died of cancer but in fact, he balanced the personal and emotive versus the detached points of view very well for this film.
That said, the personal accounts were harrowing and it was hard to detach from the individuals to see the “bigger picture”. In addition to hearing from and about Julia, we also heard testimony from other patients such as Eric and Michael, who, along with their families and patient charities, have campaigned tirelessly to get this treatment which could extend sufferers lives. They all recognised that their cancers cannot be cured, and all they wanted was to extend their lives as long as possible.
On the other hand, NICE had to decide on the bigger picture and the ‘value’ of such an expensive drug when compared to a) its actual benefit to the patient and b) its value when looked at overall in terms of providing a service to the greatest number of people possible.
Of course one’s first instinct is to say, yes, it should be available to everyone who needs it – every drug should – and in an ideal world where there was infinite funding, it would be. However, this isn’t an ideal world and with contributions from fund managers and others charged with actually managing a finite pot of money in the best way possible, the dilemma and ultimate decision was an onerous one.
Especially when faced with what in some ways amounted to a pharmaceutical hostage situation. As was pointed out in the film, if there’s no limit on what can be spent on newly developed drugs, rather than reducing the cost of them to make them more widely available, drug manufacturers are in fact likely to do the opposite and charge more for them; if the money’s there to pay for it, regardless of cost, why shouldn’t they? They’re in it for profit just as any business is, so, if they did that, healthcare authorities the world over could find themselves bankrupted in their attempt to provide every drug that every person needs, irrespective of cost or benefit.
The manufacturer of Revlimid is Celgene, an American based company who eventually did agree to “help with funding” in that they informed NICE that if the NHS paid for 2 years of the treatment for a patient, they would then provide it free thereafter for that patient. Kind offer? Yes, on the face of it, however, clinical data suggested that patients may only expect to live a few months longer on the drug and may not make it to 2 years, so it was a bet based on probability which it seemed was not often going to have to be actually honoured by Celgene.
We heard from the CEO of Celgene, Sol Barer, during an interview with Wishart at a $350 a head dinner, which all on its own somewhat negated his argument that profit isn’t at the heart of what Revlimid costs. His is a company, not a charity, and its remit is making profit, as is the case with all pharmaceutical companies. His view and argument was that if his company charged less for the drug, the profit from it couldn’t be ploughed back into further research and the development of other drugs.
However, expert Merrill Goozner, who is the author of a book about the ‘real’ cost of drug manufacture, referred to that argument as “the big lie” and how right he is. Business is business, and whatever it is you’re selling, you want to make the most money possible out of it. The fact that there is no alternative drug that could be used to barter down the cost of Revlimid was in fact one of the major driving forces behind its cost. And it’s that fact which means that Mr Barer and his colleagues can enjoy $350 a head meals.
While all that was going on, we saw and heard how the money now earmarked for Revlimid provision would have to be diverted from other areas of healthcare and potentially put the continuing provision of services such as home based palliative care under threat.
Ultimately, the decision regarding whether to green light Revlimid came to a split vote during a NICE committee meeting so it was left to the chairman, Professor David Barnett, to use his casting vote. He voted ‘yes’ and the drug was approved. Wishart said that next year, 1200 people will be prescribed Revlimid at a cost of £45 million but that money had to be found from existing funds as no new government money was forthcoming to pay for it. This was despite the fact that the increase on the spending limit per year of life per patient was raised on the recommendation of government minister Alan Johnson.
Overall, this was a very impressive film in that it presented all sides of the debate about the human cost, the ethics and the viability of drug provision, and to do so without bias towards those who would benefit from it was quite a feat. That said, as I’ve mentioned before, it was very difficult as a viewer to detach from the very emotive issues of an ordinary person – it could be me or you – having life or death decisions made for them and about them by faceless people in a committee room. But those faceless people weren’t faceless in this film and their job isn’t one I’d want.
It was without doubt upsetting and depressing to watch, but it did make me stop and think about the cost of providing treatments. In one regard, it’s wholly wrong that people such as Eric, Michael and Julia, who’ve worked all their lives and contributed to the NHS, were denied life prolonging treatment based on their age and how long they might live if given the drug. However, without a bottomless purse, that’s the reality of what NICE have to debate and decide upon.
It’s not easy, it’s not necessarily fair and it affects ordinary people everywhere, often adversely, but, as the saying goes, it’s a dirty job but somebody’s got to do it. I’m just glad I’m not one of those somebodies.