What is quality of life?

The challenge of deciding how we should decide who deserves treatment from an NHS of finite resource

It cannot be an easy or pleasant job to inform terminally ill cancer patients they will be denied access to effective drugs that have the capacity to extend their lives by months or years.

Moreover, in a society with a publicly funded health service, it is particularly difficult to justify the denial of effective treatment to patients who have paid their taxes, over their working lifetimes, in expectation that they will have access to high quality medical treatment if they fall ill.

Just such an unpleasant, difficult and controversial task has just been carried out by Professor Peter Littlejohns, the clinical director of the National Institute for Health and Clinical Excellence (NICE).

Littlejohns has released a preliminary ruling, denying access to the drugs Sutent, Avastin, Nexavar and Torisel to patients with advanced metastatic kidney cancer. These patients will, on average, die months earlier than those with the same condition in other countries in Europe where such drugs are available.

How can NICE justify its refusal to allow these patients a few extra months of life? Its methodology looks at the cost-effectiveness of medical treatments in terms of cost per extra 'quality-adjusted life year' (QALY).

If a drug or other treatment delivers an extra QALY at roughly £20,000 or less, then the treatment is judged to be cost-effective, and hence recommended. If the sums come out less favourably, then NICE decides against making that drug or treatment available on the NHS.

Although the system has some room for other considerations and can be responsive to special cases, this procedure strikes many as frighteningly cold-hearted and mechanistic. In matters of life and death, these sorts of accountants' calculations can seem cruel and out-of-place.

But what could the alternatives be? The alternative of leaving decisions to the judgement of individual hospital trusts or medical teams has little to recommend it. Firstly, it is difficult to justify a policy that depends on subjective individual judgements. Unless there are explicit public guidelines, like those followed by NICE, it is impossible to see how decisions over health-rationing could possibly be justified to those affected.

Secondly, if such decisions are made locally rather than nationally, we are thrown into the familiar problems of the 'post-code lottery'. A patient in Nottingham may find herself denied treatment that is provided to someone in Newcastle. Allowing matters of life and death to depend on the good or bad luck of geographical location seems like the very opposite of finding justifiable policies.

Another alternative might simply be to fund all medically effective treatments. But this aim would be impossible to realise. One could, after all, always produce some small marginal gain in expected QALYs with a limitlessly expandable healthcare budget.

It may be that, even with the massive increases in the NHS budget over the last eleven years of Labour government, we still do not spend enough on health care. In the UK, we spend somewhere between nine to 10 per cent of our GDP, as against other advanced countries (for example, France and
Germany) which spend nearer to 11 per cent. (Whereas before 1997, Britain spent under seven per cent of its GDP on healthcare.) But no matter how large a proportion of GDP we spend, we would still face budgetary constraints.

Hard choices have to be made: funding certain treatments will always mean not funding others.

Perhaps NICE has found the least objectionable way of performing an unenviable task. But there are potential problems with its QALY-based methodology. First of all, there is the very idea of 'quality-adjusting' a year of life. The intuitive idea is that a year of pain-free, high-functioning life is better than a year of painful, highly limited living. This seems plausible enough, but it is notoriously difficult to make judgements of 'quality of life' in any kind of fine-grained way. Some patients may consider another year of life to be of enormous value, no matter what its pains or indignities.

The calculus of QALYs can also lead to some strange decisions. For example, giving an extra 10 years of healthy life to a 15 year old would be weighed identically to giving 10 years of life to a 65 year old. But, looking beyond QALYs, most people would think it right to favour the younger patient over the older. The QALY approach had no room for these ideas of a 'fair innings'.

It can also find no room for favouring those already suffering from other forms of disadvantage over those who are otherwise advantaged.

Indeed, the QALY-approach will favour a treatment that gives X additional years of life to a 30 year-old able-bodied person, rather than X additional years to a 30 year-old disabled person, which seems quite unjust. A more just system might also give more emphasis to the diseases of the poor over the diseases of the wealthy.

We should also bear in mind that the costs of various drug treatments are not entirely fixed. Instead, those costs often depend on the price levels that profit-maximising pharmaceutical companies think they can get away with. Many pharmaceutical companies spend vast sums on the questionable practice of direct marketing to doctors, as well as funding partisan or self-serving forms of research, all of which push up the prices paid by the NHS.

Bob Essner, the CEO of Wyeth (which makes Torisel) took home $24.1 million in pay in 2007, while Jeff Kindler of Pfizer (makers of Sutent) made $12.6 million. The cost per-QALY of these drugs could no doubt be reduced if they didn't have to generate the obscene salaries of corporate fat cats like these.

NICE's QALY-based approach is a useful tool, creating the possibility of publicly justifiable decisions over healthcare rationing. But we should not lose sight of the broader regulatory context when considering how the NHS should apportion its spending on drugs. There is little doubt that a more responsible and better regulated pharmaceutical industry would mean NICE had fewer tough choices to make.

Perhaps the most interesting aspect of a QALY-based approach, though, is what it can tell us about broader issues of government policy and health outcomes. For, it turns out, what really makes a difference to the number of QALYs that individuals can look forward to depends more on factors like diet, exercise and early detection of disease, rather than the availability of expensive pharmaceuticals.

Following NICE's procedures to their full conclusion would suggest a massive move towards a pro-active rather than a reactive NHS, with more resources devoted to screening and public health measures, rather than to the treatment of those who are already nearing the end of their lives.

Moreover, as public health researchers like Sir Michael Marmot, Richard Wilkinson and Ichiro Kawachi have discovered, social inequalities have a massive impact on life-expectancy (and hence on QALYs).

More egalitarian societies, like Sweden, Denmark and Iceland, have higher average life-expectancies, even when controlling for all other factors, than do less just societies like the UK.

Indeed, as inequalities go on rising in the US, average life-expectancy is actually falling there for the very first time.

So, if NICE's approach has much to recommend it, it leads us to the conclusion that a concern with the health of our society leads us beyond thinking only about the NHS, but encompasses much broader policies for securing social justice.

Martin O’Neill is a political philosopher, based at the Centre for Political Theory in the Department of Politics at the University of Manchester. He has previously taught at Cambridge and Harvard, and is writing a book on Corporations and Social Justice.
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This Ada Lovelace Day, let’s celebrate women in tech while confronting its sexist culture

In an industry where men hold most of the jobs and write most of the code, celebrating women's contributions on one day a year isn't enough. 

Ada Lovelace wrote the world’s first computer program. In the 1840s Charles Babbage, now known as the “father of the computer”, designed (though never built) the “Analytical Engine”, a machine which could accurately and reproducibly calculate the answers to maths problems. While translating an article by an Italian mathematician about the machine, Lovelace included a written algorithm for which would allow the engine to calculate a sequence of Bernoulli numbers.

Around 170 years later, Whitney Wolfe, one of the founders of dating app Tinder, was allegedly forced to resign from the company. According to a lawsuit she later filed against the app and its parent company, she had her co-founder title removed because, the male founders argued, it would look “slutty”, and because “Facebook and Snapchat don’t have girl founders. It just makes it look like Tinder was some accident". (They settled out of court.)

Today, 13 October, is Ada Lovelace day – an international celebration of inspirational women in science, technology, engineering and mathematics (STEM). It’s lucky we have this day of remembrance, because, as Wolfe’s story demonstrates, we also spend a lot of time forgetting and sidelining women in tech. In the wash of pale male founders of the tech giants that rule the industry,we don't often think about the women that shaped its foundations: Judith Estrin, one of the designers of TCP/IP, for example, or Radia Perlman, inventor of the spanning-tree protocol. Both inventions sound complicated, and they are – they’re some of the vital building blocks that allow the internet to function. 

And yet David Streitfield, a Pulitzer-prize winning journalist, someow felt it accurate to write in 2012: “Men invented the internet. And not just any men. Men with pocket protectors. Men who idolised Mr Spock and cried when Steve Jobs died.”

Perhaps we forget about tech's founding women because the needle has swung so far into the other direction. A huge proportion – perhaps even 90 per cent - of the world’s code is written by men. At Google, women fill 17 per cent of technical roles. At Facebook, 15 per cent. Over 90 per cent of the code respositories on Github, an online service used throughout the industry, are owned by men. Yet it's also hard to believe that this erasure of women's role in tech is completely accidental. As Elissa Shevinsky writes in the introduction to a collection of essays on gender in tech, Lean Out: “This myth of the nerdy male founder has been perpetuated by men who found this story favourable."

Does it matter? It’s hard to believe that it doesn’t. Our society is increasingly defined and delineated by code and the things it builds. Small slip-ups, like the lack of a period tracker on the original Apple Watch, or fitness trackers too big for some women’s wrists, gesture to the fact that these technologies are built by male-dominated teams, for a male audience.

In Lean Out, one essay written by a Twitter-based “start-up dinosaur” (don’t ask) explains how dangerous it is to allow one small segment of society to built the future for the rest of us:

If you let someone else build tomorrow, tomorrow will belong to someone else. They will build a better tomorrow for everyone like them… For tomorrow to be for everyone, everyone needs to be the one [sic] that build it.

So where did all the women go? How did we get from a rash of female inventors to a situation where the major female presence at an Apple iPhone launch is a model’s face projected onto a screen and photoshopped into a smile by a male demonstrator? 

Photo: Apple.

The toxic culture of many tech workplaces could be a cause or an effect of the lack of women in the industry, but it certainly can’t make make it easy to stay. Behaviours range from the ignorant - Martha Lane-Fox, founder of, often asked “what happens if you get pregnant?” at investors' meetings - to the much more sinister. An essay in Lean Out by Katy Levinson details her experiences of sexual harassment while working in tech: 

I have had interviewers attempt to solicit sexual favors from me mid-interview and discuss in significant detail precisely what they would like to do. All of these things have happened either in Silicon Valley working in tech, in an educational institution to get me there, or in a technical internship.

Others featured in the book joined in with the low-level sexism and racism  of their male colleagues in order to "fit in" and deflect negative attention. Erica Joy writes that while working in IT at the University of Alaska as the only woman (and only black person) on her team, she laughed at colleagues' "terribly racist and sexist jokes" and "co-opted their negative attitudes”. 

The casual culture and allegedly meritocratic hierarchies of tech companies may actually be encouraging this discriminatory atmosphere. HR and the strict reporting procedures of large corporates at least give those suffering from discrimination a place to go. A casual office environment can discourage reporting or calling out prejudiced humour or remarks. Brook Shelley, a woman who transitioned while working in tech, notes: "No one wants to be the office mother". So instead, you join in and hope for the best. 

And, of course, there's no reason why people working in tech would have fewer issues with discrimination than those in other industries. A childhood spent as a "nerd" can also spawn its own brand of misogyny - Katherine Cross writes in Lean Out that “to many of these men [working in these fields] is all too easy to subconciously confound women who say ‘this is sexist’ with the young girls who said… ‘You’re gross and a creep and I’ll never date you'". During GamerGate, Anita Sarkeesian was often called a "prom queen" by trolls. 

When I spoke to Alexa Clay, entrepreneur and co-author of the Misfit Economy, she confirmed that there's a strange, low-lurking sexism in the start-up economy: “They have all very open and free, but underneath it there's still something really patriarchal.” Start-ups, after all, are a culture which celebrates risk-taking, something which women are societally discouraged from doing. As Clay says, 

“Men are allowed to fail in tech. You have these young guys who these old guys adopt and mentor. If his app doesn’t work, the mentor just shrugs it off. I would not be able ot get away with that, and I think women and minorities aren't allowed to take the same amount of risks, particularly in these communities. If you fail, no one's saying that's fine.

The conclusion of Lean Out, and of women in tech I have spoken to, isn’t that more women, over time, will enter these industries and seamlessly integrate – it’s that tech culture needs to change, or its lack of diversity will become even more severe. Shevinsky writes:

The reason why we don't have more women in tech is not because of a lack of STEM education. It's because too many high profile and influential individuals and subcultures within the tech industry have ignored or outright mistreated women applicants and employees. To be succinct—the problem isn't women, it's tech culture.

Software engineer Kate Heddleston has a wonderful and chilling metaphor about the way we treat women in STEM. Women are, she writes, the “canary in the coal mine”. If one dies, surely you should take that as a sign that the mine is uninhabitable – that there’s something toxic in the air. “Instead, the industry is looking at the canary, wondering why it can’t breathe, saying ‘Lean in, canary, lean in!’. When one canary dies they get a new one because getting more canaries is how you fix the lack of canaries, right? Except the problem is that there isn't enough oxygen in the coal mine, not that there are too few canaries.” We need more women in STEM, and, I’d argue, in tech in particular, but we need to make sure the air is breatheable first. 

Barbara Speed is a technology and digital culture writer at the New Statesman and a staff writer at CityMetric.

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What Jeremy Corbyn can learn from Orwell

Corbyn’s ideas may echo George Orwell’s – but they’d need Orwell’s Britain to work. It’s time Corbyn accepted the British as they are today.

All Labour Party leaderships since 1900 have offered themselves as “new”, but Tony Blair’s succession in 1994 triggered a break with the past so ruthless that the Labour leadership virtually declared war on the party. Now it is party members’ turn and they, for now at any rate, think that real Labour is Jeremy.

To Keir Hardie, real Labour had been a trade union lobby expounding Fellowship. To the Webbs, real Labour was “common ownership” by the best means available. Sidney’s Clause Four (adopted 1918) left open what that might be. In the 1920s, the Christian Socialist R H Tawney stitched Equality into the banner, but during the Depression young intellectuals such as Evan Durbin and Hugh Gaitskell designated Planning as Labour’s modern mission. After the Second World War, Clement Attlee followed the miners (and the London Passenger Transport Board) into Nationalisation. Harold Wilson tried to inject Science and Technology into the mix but everything after that was an attempt to move Labour away from state-regulated markets and in the direction of market-regulated states.

What made the recent leadership contest so alarming was how broken was the intellectual tradition. None of the candidates made anything of a long history of thinking about the relationship between socialism and what the people want. Yvette Cooper wanted to go over the numbers; only they were the wrong numbers. Andy Burnham twisted and turned. Liz Kendall based her bid on two words: “Have me.” Only Jeremy Corbyn seemed to have any kind of Labour narrative to tell and, of course, ever the ­rebel, he was not responsible for any of it. His conference address in Brighton was little more than the notes of a street-corner campaigner to a small crowd.

Given the paucity of thinking, and this being an English party for now, it is only a matter of time before George Orwell is brought in to see how Jeremy measures up. In fact, it’s happened already. Rafael Behr in the Guardian and Nick Cohen in the Spectator both see him as the kind of hard-left intellectual Orwell dreaded, while Charles Cooke in the National Review and Jason Cowley in the New Statesman joined unlikely fashion forces to take a side-look at Jeremy’s dreadful dress sense – to Orwell, a sure sign of a socialist. Cooke thought he looked like a “burned-out geography teacher at a third-rate comprehensive”. Cowley thought he looked like a red-brick university sociology lecturer circa 1978. Fair enough. He does. But there is more. Being a middle-class teetotal vegetarian bicycling socialistic feministic atheistic metropolitan anti-racist republican nice guy, with allotment and “squashily pacifist” leanings to match, clearly puts him in the land of the cranks as described by Orwell in The Road to Wigan Pier (1937) – one of “that dreary tribe of high-minded women and sandal-wearers and bearded fruit-juice drinkers who come flocking towards the smell of ‘progress’ like bluebottles to a dead cat”. And though Corbyn, as “a fully fledged, fully bearded, unabashed socialist” (Huffington Post), might make all true Orwellians twitch, he really made their day when he refused to sing the National Anthem. Orwell cited precisely that (see “The Lion and the Unicorn”, 1941) as an example of the distance between left-wing intellectuals and the people. It seemed that, by standing there, mouth shut, Comrade Corbyn didn’t just cut his wrists, he lay down full length in the coffin and pulled the lid shut.


Trouble is, this line of attack not only misrepresents the Labour leader, it misrepresents Orwell. For the great man was not as unflinchingly straight and true as some people think. It is impossible, for instance, to think of Orwell singing “God Save the King”, because he, too, was one of that “dreary tribe” of London lefties, and even when he joined Labour he remained ever the rebel. As for Corbyn, for a start, he is not badly dressed. He just doesn’t look like Chuka or Tristram. He may look like a threadbare schoolteacher, but Orwell was one twice over. Orwell was never a vegetarian or a teetotaller, but, like Corbyn, neither was he interested in fancy food (or drink), he kept an allotment, drove a motorbike, bicycled, cared about the poor, cared about the environment, loathed the empire, came close to pacifism at one point, and opposed war with Germany well past the time when it was reasonable to do so.

In Orwell’s thinking about socialism, for too long his main reference point was the London Marxist left. Not only did he make speeches in favour of revolutions, he took part in one with a gun in his hand. Orwell was far more interested, as Corbyn has been far more interested, in speaking truth to power than in holding office. His loyalty was to the movement, or at least the idea of the movement, not to MPs or the front bench, which he rarely mentioned. There is nothing in Corbyn’s position that would have shocked Orwell and, should they have met, there’d have been much to talk about: belief in public ownership and non-economic values, confidence in the state’s ability to make life better, progressive taxation, national health, state education, social care, anti-socially useless banking, anti-colonialism and a whole lot of other anti-isms besides. It’s hard to be sure what Orwell’s position would have been on Trident and immigration. Not Corbyn’s, I suspect. He was not as alert to feminism as he might have been but equally, few men try to write novels from a woman’s point of view and all Orwellians recognise that Julia is the dark hero of Nineteen Eighty-Four. In truth they are both austere types, not in it for themselves and not on anyone else’s expense account either. Corbyn won the leadership because this shone through from the very beginning. He came across as unaffected and straightforward – much as Orwell tried to be in his writing.

Except, as powerfully expressed in these pages by John Gray, Corbyn’s politics were made for another world. What sort of world would he need? First off, he’d need a regulated labour market: regulated by the state in partnership with a labour movement sensitive to what people wanted and experienced in trying to provide it. He would also need capital controls, a manufacturing base capable of building the new investment with Keynesian payback, an efficient and motivated Inland Revenue, a widespread public-service ethos that sees the country as an asset, not a market, and an overwhelming democratic mandate to get things done. In other words, Corbyn needs Orwell’s Britain – not this one – and at the very least, if he can’t have that, he needs the freedom to act that the European Commission forbids.

There’s another problem. Orwell did not trust left-wing intellectuals and spent half his life trying to work out their motivations as a class who spoke for the people, went in search of the people, and praised the people, but did not know them or believe in them. True, Corbyn says he wants to be open and inclusive, but we know he can’t possibly mean it when he says it will be the party, not him or the PLP, that will decide policy, just as we knew it couldn’t possibly be true when he said he’d turn PMQs into the People’s Question Time. Jeremy hasn’t changed his mind in forty years, appears to have great difficulty (unlike Tony Benn) in fusing socialism to national identity or experience (Hardie, Ben Okri and Maya Angelou were bolted on to his Brighton speech) and seems to think that not being happy with what you are given somehow captures the historic essence of socialism (rather than its opposite).

Granted, not thinking outside the ­circle is an inherent fault of the sectarian left but some of our most prominent left-wing journalists have it, too. Working-class support for nationalisation? Good. Right answer! Working-class opposition to benefit scroungers and further mass immigration? Bad. Wrong answer! Would you like to try again? In his essay “In Defence of Comrade Zilliacus” (1947) Orwell reckoned that left-wing intellectuals saw only what they wanted to see. For all their talk of representing the people, they hated the masses. “What they are frightened of is the prevailing opinion within their own group . . . there is always an orthodoxy, a parrot-cry . . .”

The game is hard and he may go down in a welter of knives, yet Corbyn still has time. He may go on making the same speech – on the benefits of apple pie to apple growers – but at some point he will have to drop the wish-list and get on the side of the British people as they are, and live with that, and build into it. Only the nation state can even begin to do the things he wants to do. The quicker he gets that, the quicker we can see if the latest incarnation of new Labour has a future.

Robert Colls is the author of “George Orwell: English Rebel” (Oxford University Press)

This article first appeared in the 08 October 2015 issue of the New Statesman, Putin vs Isis