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.
Show Hide image

Bernie Sanders and the future of the American left

How an old, white guy is bringing class-based politics to the Democratic primary.

One thing is immediately striking: as he addresses primary rallies across America, arms flailing like a giant bird coming in to land, snow-white hair fizzing skywards like Doc Brown’s in Back to the Future, eyes startled behind the robust spectacles he has worn since childhood, Bernie Sanders looks quite unlike any other presidential candidate.

Perhaps the surprise in those eyes is sparked by the size of the crowds Sanders has been attracting. They are enormous, rivalling the numbers who turned out for Barack Obama back in 2008, and unprecedented for a candidate who is not shy of describing himself as a socialist: 28,000 in Portland and LA, 25,000 in Boston and 15,000 in Seattle. Even in Dallas, not a renowned centre of radicalism, 8,000 turned out to “feel the Bern”.

In these days when slick suits and expensive haircuts are increasingly a turn-off for a public weary of smooth politicians they see as delivering only for the wealthy, Sanders’s persona, like that of Jeremy Corbyn, his equally unkempt British counterpart, has proved popular. But it is his message – an angry chronicling of the depredations facing so many Americans and a solid social-democratic programme for putting things right – that is really pulling in the crowds. Sanders, who is 74, and the main challenger to Hillary Clinton for the Democratic nomination, doesn’t just look different. With his confident calls for a “revolution” to break up the banks and impose higher taxes on the rich, he doesn’t sound like any other recent presidential contender, either.


I first met Bernie Sanders in 1996. I was the publisher of his book Outsider in the House, a political autobiography that appeared the following year (and which has just been reissued by Verso with a new foreword, and more than a hint of optimism, as Outsider in the White House). The occasion was a benefit concert during his successful bid to be re-elected to the House of Representatives from the small, rural state of Vermont.

Sanders’s early years are not well documented, least of all by him. He devotes less than three of the 300 pages in Outsider to the first three decades of his life. He doesn’t much care for the “humble roots” narrative beloved of so many politicians, generally millionaires whose ancestors lived in broken-down cabins. But the raw material is certainly there. The son of Polish immigrants, Sanders grew up in a working-class Jewish family in Flatbush, Brooklyn. At home, money was tight: “Every major household purchase . . . would be accompanied by a fight between my parents as to whether we could afford it,” he wrote.

It was an achievement to gain admission to the University of Chicago, and though he described himself as “not a good student”, that was a result of sacrificing coursework to the cause of social activism. He settled permanently in Vermont at the age of 27, having bought an 85-acre farm in the north of the state for $2,500. Four years later he moved to Burlington, the state capital, where he became involved in city politics, at first in the tiny Liberty Union Party and then as an independent. In 1981 he was inaugurated as mayor and commenced a series of tilts at the state’s congressional seat. He finally entered the House of Representatives in 1991 – the first independent candidate to enter Congress in 40 years.

By the time I encountered him, Sanders was seeking to defend his seat for the third time. The concert where we met was taking place in an old art-deco theatre in Brattleboro, perhaps the most hippiefied community in a state where tie-dye remains as ubiquitous as dairy herds. It was headlined by Pete Seeger, who ran through a panoply from his folk songbook to a packed crowd that knew all the words.

Ten years earlier, Mayor Sanders, a long-time admirer of Seeger, had recorded one of his songs, “Where Have All the Flowers Gone”, on a surreal folk/rap album. Now, he waited until Seeger had finished his set before taking the stage and, speaking in the only manner he seems to know – a gruff, shouted staccato – exhorted Vermonters to join him in the fight against Newt Gingrich and Bob Dole to stop the Republicans from taking over the presidency and the Senate. The response was rapturous. Sanders left the stage like a president concluding a State of the Union speech, gladhanding lines of admirers as he made his way out of the hall.

A few weeks later I met him again, this time at his congressional office in Washington, DC. On the wall of his office I spotted a plaque of Eugene Debs, who ran for Congress and the presidency on a socialist ticket, travelling to every part of the country on a train he called the Red Special and picking up 6 per cent of the popular vote in 1912, when he finished fourth, behind Woodrow Wilson, Theodore Roosevelt and William Howard Taft.

Sanders had invited me to lunch and so we headed off through the underground passageway that leads from the office building to the congressional dining room. We were accompanied along the way by one of his assistants who, in true West Wing style, peppered him with questions and made notes on a clipboard as we walked. We had just started our food when John Kasich, then congressman for Ohio and now governor of the state and a contender for the Republican presidential nomination, wandered over for a chat. Despite Kasich’s reputation as a fiscal conservative, it was evident that he and Sanders had a cordial relationship, and indeed, Sanders invited him to join us for lunch.

It was difficult to reconcile these two contrasting snapshots of Sanders: the rousing air punch in Vermont and the bridge-building handshake in DC. But the more one looks into his career, the clearer it becomes that this dual approach is integral to his remarkable political ascent. Sanders plays it quite differently inside and out, but he plays both sides very hard.

“Bernie doesn’t see a contradiction between working within the system and campaigning to change it,” the journalist Matt Taibbi told me, recalling the time when he shadowed Sanders for several weeks in 2005 while researching a piece for Rolling Stone. “I remember one Thursday afternoon I made a snarky comment about members of the House already sneaking off home for a long weekend and how it seemed to me that many of them were pretty lazy. Bernie scolded me, insisting that most of the people in Congress work very conscientiously. He doesn’t believe the system functions for ordinary people, but he’s not cynical about it either.”

This point was reiterated by Heather Gautney, an associate professor of sociology at Fordham University in New York who previously worked as a researcher in Sanders’s Senate office. “Working with Bernie in DC, I realised what a difficult place it was for someone more interested in movement-building than passing legislation,” Gautney said. “But Bernie was known for getting substantial chunks of the Republican vote in Vermont and he used that same skill to connect with some pretty unlikely allies in Congress.”

Sanders’s legislative record is strikingly good. In the decade after the Republicans took over the House of Representatives in 1995 no other lawmaker attached more amendments to bills that were voted on. He achieved this by using his position as an independent to put together coalitions that spanned both of the main parties, and also by sheer hard work. In his Rolling Stone article, Taibbi describes Sanders waiting patiently for hours to table an amendment in the office of the House rules committee, “a tiny, airless closet deep in the labyrinth of the Capitol where some of the very meanest people on Earth spend their days cleaning democracy like a fish”.

Sanders’s method of working across party lines is not without its critics. Especially on the left, there are voices that wonder if the compromises that inevitably accompany playing the system in DC are too large. Many of Sanders’s positions on foreign policy have skewed towards the militarism and careless disregard for human rights that prevail among the Washington establishment. Although notably, and unlike Hillary Clinton, he opposed the initial vote on the Iraq War, Sanders voted for every bill that came before Congress to fund the occupations of Afghanistan and Iraq. He has supported basing the new F-35 fighter plane at Burlington Airport in Vermont, despite widespread concern from residents about the environmental impact. And he did not oppose the Senate resolution that supported Israel’s attack on Gaza in 2014, which left as many as 2,200 Palestinians dead.

Sanders is clearly happier talking about problems inside the US than foreign policy. In his opening statement to last Saturday’s televised debate between the Democratic candidates, he segued awkwardly from condemning the attacks in Paris to excoriating America’s “rigged economy”. Yet on domestic issues, too, some of his stands have given progressives pause for thought: his opposition to the Trans-Pacific Partnership, a 12-country trade agreement championed by Barack Obama, has always been grounded in an argument in favour of saving jobs for American workers, rather than any notion of international solidarity. His slowness in expressing support for the burgeoning Black Lives Matter movement, something which his campaign has latterly striven hard to correct, was less of a surprise to those aware of his consistent support for the police union while mayor of Burlington. And his position on guns (he voted against the Brady Bill, which mandated background checks on buyers of firearms) is the only area in which Clinton outflanks him to the left.

But perhaps the biggest issue for many progressives is Sanders’s decision to run for president through, rather than outside, the Democratic primary. Though he began his political career in the Liberty Union Party and has stood in every election since as an independent, he is, as Howard Dean, the progressives’ challenger in the Democratic primary of 2003/2004, put it, “basically . . . a Democrat . . . [who] votes with the Democrats 98 per cent of the time”.

As Sanders relates in Outsider in the House, faced in 1996 with the choice of backing Ralph Nader, “a personal friend and an exemplary progressive” running as an independent, or Bill Clinton, whose policies on health care, welfare reform, trade, gay marriage and military spending he sharply disagreed with, Sanders decided to “support” Clinton. “Perhaps ‘support’ is too strong a word,” he frets in the book. “I’m planning no press conferences to push his candidacy, and will do no campaigning for him. I will vote for him, and make that public.”

Sanders has called for a vote for the Democratic nominee in every presidential election since Jimmy Carter left office in 1981, and early this month, on ABC’s This Week, he appeared to have completed a long transition, asserting: “I am a Democrat now.”

This failure to build an electoral force outside the Democrats always leads to a dead end, according to Anthony Arnove, a prominent member of the International Socialist Organisation (ISO) who is also a publisher and literary agent representing a range of leftish writers, including Arundhati Roy. “We’ve seen it over and over,” Arnove said: “a left challenge fires up the base and is then defeated in the primaries by a centrist, or, more accurately, right-wing candidate, who goes on to betray everything those people were mobilised around.”

Sanders’s fundraising almost matched Clinton’s over the summer – in the third quarter they raised $26m and $28m, respectively – and in September he became the first candidate to attract more than a million individual donations. (The average donation to his campaign has been $30.) But his dip in the polls after Hillary’s strong performances in the first nationally televised primary debate, and then again at her House select committee hearing on the 2012 attack on the US consulate in Benghazi, Libya, suggests he will struggle to win the nomination. As of early November he trailed Clinton nationally by 25 points.

In Arnove’s view, Sanders “won’t get further than Super Tuesday [at the beginning of March], when he’ll direct his base to vote for Clinton. This is exactly how the Democrats become a graveyard for progressive politics, when what we desperately need are social movements that can remain independent of both establishment parties and push for their own agenda.”


The revolution to which Sanders often refers is a long way from the sort envisaged by Arnove’s ISO. He is pursuing a fairer capitalism, not its overthrow. “He’s not Trotsky,” as Taibbi put it to me. But there are those inside his campaign who think its primary focus should be building a grass-roots organisation capable of transcending the four-yearly coming together of presidential elections, to create a more permanent basis for a broad, progressive movement.

One such advocate is Adolph Reed, a writer and academic who is campaigning for Sanders in South Carolina. Working with local unions and Labor for Bernie Sanders 2016, which has 70,000 signed-up members, Reed sees the potential in using Sanders’s programme, with its emphasis on basic economic demands such as the minimum wage, universal health care and free college tuition, as a way of drawing together various groups campaigning around single issues such as housing and police racism.

For Reed, who is black, class trumps race as the key to building a movement. “In New Orleans everyone talked about Katrina as having a devastating effect on black people in the city, which of course it did. But when you analyse it, class was a much better predictor of who suffered most there,” he told me. The centre of a class-based movement, Reed argues, will have to be provided by the trade unions. “Despite the fashionability of protests without any specific demands or elected leaderships, no movement initiative is going to have staying power without being anchored in the trade unions.”

Recruiting the unions to work alongside Sanders’s campaign in the way Reed envisages isn’t easy. The American Federation of Teachers and the machinists’ union have already thrown in their lot with Hillary Clinton. And Richard Trumka, the president of the AFL-CIO (America’s national federation of trade unions), has warned individual unions against coming out for Sanders. But Reed can point to significant declarations of support, from postal workers and the National Nurses Union. The AFL-CIO chapters in Vermont and, more surprisingly, South Carolina have also backed his run.

“It’s important to keep Bernie in the race for as long as possible, but the ultimate objective is to develop structures that can continue beyond the election,” Reed said. “It’s premature to say what this network will look like, but Bernie’s campaign provides an important boost to putting it in place.”


From Jesse Jackson to Dennis Kuci­nich to Howard Dean, an array of people’s champions has made a splash in the recent history of Democratic presidential primaries. None, however, has been as explicitly critical of capitalism (or so gruff about it) as Bernie Sanders. His no-nonsense, class-based politics are a measure of how the disenchantment with the ideology of a free market that arrived like a train in the 1980s and ran off the rails in 2008 is now finding its way into the mainstream.

Up until now, the critical moments of left advance in America – the Seattle WTO protests, the anti-war movement, Occupy Wall Street, the campaign for gay rights and, today, Black Lives Matter – have occurred outside electoral politics. There are a couple of good reasons for this. The US electoral system, like Britain’s, makes third-party challenges extraordinarily difficult. And inside the Democratic Party these movements would have been crushed by a conservative leadership around the Democratic National Committee, put in place by Bill Clinton.

One result is a paucity of new progressive voices inside the party. At a moment when, as Gramsci once put it, the old order no longer works but the new order has not yet been born, Sanders, with his New Deal politics and firebrand demeanour, seems not so much a successor to the old order as a throwback to a time that pre-dates it, when politicians spoke with conviction and the society they represented was less unfair. As such, he provides a staging post for a new progressive consciousness (according to a poll by Pew at the end of 2011, more Americans aged 18 to 29 would prefer to live under socialism than under capitalism) that is not yet sufficiently coherent to enter mainstream politics in its own right, either through a serious third-party challenge or the transformation of the Democratic Party.

As a middle-class white man, Sanders has been able to get a pass to promote bold positions that someone with a less privileged identity might have found hard to sell. And his age, paradoxically, has proved not to be a disadvantage with a youthful constituency dismayed by the surrender to expedience that disfigures so much of contemporary American politics. His record has been constant over such a long period that, again like Jeremy Corbyn, he can be relied on not to sell out. Though his politics are less radical, his venerability provides a messianic cloak from the same closet as the one worn by Noam Chomsky, another hero for many young progressives.

So it’s not just today’s professionally polished politicians to whom Sanders presents a stark contrast. Recent progressive movements have embraced an identity politics that was much less prevalent when Sanders started out back in 1970s Vermont. In order to forge the sorts of alliances that are necessary to mount a credible challenge on the national political stage, they will likely have to borrow extensively from his unifying class politics. But their leadership will be younger, blacker, less straight and less masculine than Sanders. In that sense, he represents the last hurrah for the old white guy.

Colin Robinson is co-publisher at OR Books (, based in New York

This article first appeared in the 19 November 2015 issue of the New Statesman, The age of terror