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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We need to talk about the online radicalisation of young, white women

Alt-right women are less visible than their tiki torch-carrying male counterparts - but they still exist. 

In November 2016, the writer and TED speaker Siyanda Mohutsiwa tweeted a ground-breaking observation. “When we talk about online radicalisation we always talk about Muslims. But the radicalisation of white men online is at astronomical levels,” she wrote, inspiring a series of mainstream articles on the topic (“We need to talk about the online radicalisation of young, white men,” wrote Abi Wilkinson in The Guardian). It is now commonly accepted that online radicalisation is not limited to the work of Isis, which uses social media to spread propaganda and recruit new members. Young, white men frequently form alt-right and neo-Nazi beliefs online.

But this narrative, too, is missing something. When it comes to online radicalisation into extreme right-wing, white supremacist, or racist views, women are far from immune.

“It’s a really slow process to be brainwashed really,” says Alexandra*, a 22-year-old former-racist who adopted extreme views during the United States presidential election of 2016. In particular, she believed white people to be more intelligent than people of colour. “It definitely felt like being indoctrinated into a cult.”

Alexandra was “indoctrinated” on 4Chan, the imageboard site where openly racist views flourish, especially on boards such as /pol/. It is a common misconception that 4Chan is only used by loser, basement-dwelling men. In actuality, 4Chan’s official figures acknowledge 30 percent of its users are female. More women may frequent 4Chan and /pol/ than it first appears, as many do not announce their gender on the site because of its “Tits or GTFO” culture. Even when women do reveal themselves, they are often believed to be men who are lying for attention.

“There are actually a lot of females on 4chan, they just don't really say. Most of the time it just isn't relevant,” says Alexandra. Her experiences on the site are similar to male users who are radicalised by /pol/’s far-right rhetoric. “They sowed the seeds of doubt with memes,” she laughs apprehensively. “Dumb memes and stuff and jokes…

“[Then] I was shown really bullshit studies that stated that some races were inferior to others like… I know now that that’s bogus science, it was bad statistics, but I never bothered to actually look into the truth myself, I just believed what was told to me.”

To be clear, online alt-right radicalisation still skews majority male (and men make up most of the extreme far-right, though women have always played a role in white supremacist movements). The alt-right frequently recruits from misogynistic forums where they prey on sexually-frustrated males and feed them increasingly extreme beliefs. But Alexandra’s story reveals that more women are part of radical right-wing online spaces than might first be apparent.

“You’d think that it would never happen to you, that you would never hold such horrible views," says Alexandra. "But it just happened really slowly and I didn't even notice it until too late."

***

We are less inclined to talk about radical alt-right and neo-Nazi women because they are less inclined to carry out radical acts. Photographs that emerged from the white nationalist rally in Charlottesville this weekend revealed that it was mostly polo shirt-wearing young, white men picking up tiki torches, shouting racial slurs, and fighting with counter-protestors. The white supremacist and alt-right terror attacks of the last year have also been committed by men, not women. But just because women aren’t as visible doesn’t mean they are not culpable.  

“Even when people are alt-right or sympathisers with Isis, it’s a tiny percentage of people who are willing or eager to die for those reasons and those people typically have significant personal problems and mental health issues, or suicidal motives,” explains Adam Lankford, author of The Myth of Martyrdom: What Really Drives Suicide Bombers, Rampage Shooters, and Other Self-Destructive Killers.

“Both men and women can play a huge role in terms of shaping the radicalised rhetoric that then influences those rare people who commit a crime.”

Prominent alt-right women often publicly admit that their role is more behind-the-scenes. Ayla Stewart runs the blog Wife With a Purpose, where she writes about “white culture” and traditional values. She was scheduled to speak at the Charlottesville “Unite the Right” rally before dropping out due to safety concerns. In a blog post entitled “#Charlottesville May Have Redefined Women’s Roles in the Alt Right”, she writes:

“I’ve decided that the growth of the movement has necessitated that I pick and choose my involvement as a woman more carefully and that I’m more mindful to chose [sic] women’s roles only.”

These roles include public speaking (only when her husband is present), gaining medical skills, and “listening to our men” in order to provide moral support. Stewart declined to be interviewed for this piece.

It is clear, therefore, that alt-right women do not have to carry out violence to be radical or radicalised. In some cases, they are complicit in the violence that does occur. Lankford gives the example of the Camp Chapman attack, committed by a male Jordanian suicide bomber against a CIA base in Afghanistan.

“What the research suggests in that case was the guy who ultimately committed the suicide bombing may have been less radical than his wife,” he explains. “His wife was actually pushing him to be more radical and shaming him for his lack of courage.” 

***

Just because women are less likely to be violent doesn’t mean they are incapable of it.

Angela King is a former neo-Nazi who went to prison for her part in the armed robbery and assault of a Jewish shop owner. She now runs Life After Hate, a non-profit that aims to help former right-wing extremists. While part of a skinhead gang, it was her job to recruit other women to the cause.

“I was well known for the violence I was willing to inflict on others… often times the men would come up to me and say we don’t want to physically hurt a woman so can you take care of this,” King explains. “When I brought other women in I looked for the same qualities in them that I thought I had in myself.”

King's 1999 mugshot

 

These traits, King explains, were anger and a previous history of violence. She was 15 when she became involved with neo-Nazis, and explains that struggles with her sexuality and bullying had made her into a violent teenager.

“I was bullied verbally for years. I didn't fit in, I was socially awkward,” she says. One incident in particular stands out. Aged 12, King was physically bullied for the first time.

“I was humiliated in a way that even today I still am humiliated by this experience,” she says. One day, King made the mistake of sitting at a desk that “belonged” to a bully. “She started a fight with me in front of the entire class… I’ve always struggled with weight so I was a little bit pudgy, I had my little training bra on, and during the fight she ripped my shirt open in front of the entire class.

“At that age, having absolutely no self-confidence, I made the decision that if I became the bully, and took her place, I could never be humiliated like that again.”

Angela King, aged 18

King’s story is important because when it comes to online radicalisation, the cliché is that bullied, “loser” men are drawn to these alt-right and neo-Nazi communities. The most prominent women in the far-right (such as Stewart, and Lauren Southern, a YouTuber) are traditionally attractive and successful, with long blonde hair and flashing smiles. In actuality, women that are drawn to the movement online might be struggling, like King, to be socially accepted. This in no way justifies or excuses extreme behaviour, but can go some way to explaining how and why certain young women are radicalised. 

“At the age of 15 I had been bullied, raped. I had started down a negative path you know, experimenting with drugs, drinking, theft. And I was dealing with what I would call an acute identity crisis and essentially I was a very, very angry young woman who was socially awkward who did not feel like I had a place in the world, that I fit in anywhere. And I had no self-confidence or self-esteem. I hated everything about myself.”

King explains that Life After Hate’s research reveals that there are often non-ideological based precursors that lead people to far right groups. “Individuals don’t go to hate groups because they already hate everyone, they go seeking something. They go to fill some type of void in their lives that they’re not getting.”

None of this, of course, excuses the actions and beliefs of far-right extremists, but it does go some way to explaining how “normal” young people can be radicalised online. I ask Alexandra, the former 4Chan racist, if anything else was going on in her life when she was drawn towards extreme beliefs.

“Yes, I was lonely,” she admits.                                                       

***

That lonely men and women can both be radicalised in the insidious corners of the internet shouldn’t be surprising. For years, Isis has recruited vulnerable young women online, with children as young as 15 becoming "jihadi brides". We have now acknowledged that the cliché of virginal, spotty men being driven to far-right hate excludes the college-educated, clean-cut white men who made up much of the Unite the Right rally last weekend. We now must realise that right-wing women, too, are radicalised online, and they, too, are culpable for radical acts.  

It is often assumed that extremist women are radicalised by their husbands or fathers, which is aided by statements by far-right women themselves. The YouTuber, Southern, for example, once said:  

“Anytime they [the left] talk about the alt-right, they make it sound like it’s just about a bunch of guys in basements. They don’t mention that these guys have wives – supportive wives, who go to these meet-ups and these conferences – who are there – so I think it’s great for right-wing women to show themselves. We are here. You’re wrong.”

Although there is truth in this statement, women don’t have to have far-right husbands, brothers, or fathers in order to be drawn to white supremacist or alt-right movements. Although it doesn’t seem the alt-right are actively preying on young white women the same way they prey on young white men, many women are involved in online spaces that we wrongly assume are male-only. There are other spaces, such as Reddit's r/Hawtschwitz, where neo-Nazi women upload nude and naked selfies, carving a specific space for themselves in the online far-right. 

When we speak of women radicalised by husbands and fathers, we misallocate blame. Alexandra deeply regrets her choices, but she accepts they were her own. “I’m not going to deny that what I did was bad because I have to take responsibility for my actions,” she says.

Alexandra, who was “historically left-wing”, was first drawn to 4Chan when she became frustrated with the “self-righteousness” of the website Tumblr, favoured by liberal teens. Although she frequented the site's board for talking about anime, /a/, not /pol/, she found neo-Nazi and white supremacist beliefs were spread there too. 

“I was just like really fed up with the far left,” she says, “There was a lot of stuff I didn't like, like blaming males for everything.” From this, Alexandra became anti-feminist and this is how she was incrementally exposed to anti-Semitic and racist beliefs. This parallels the story of many radicalised males on 4Chan, who turn to the site from hatred of feminists or indeed, all women. 

 “What I was doing was racist, like I – deep down I didn't really fully believe it in my heart, but the seeds of doubt were sowed again and it was a way to fit in. Like, if you don't regurgitate their opinions exactly they’ll just bully you and run you off.”

King’s life changed in prison, where Jamaican inmates befriended her and she was forced to reassess her worldview. Alexandra now considers herself “basically” free from prejudices, but says trying to rid herself of extreme beliefs is like “detoxing from drugs”. She began questioning 4Chan when she first realised that they genuinely wanted Donald Trump to become president. “I thought that supporting Trump was just a dumb meme on the internet,” she says.

Nowadays, King dedicates her life to helping young people escape from far-right extremism. "Those of us who were involved a few decades ago we did not have this type of technology, cell phones were not the slim white phones we have today, they were giant boxes," she says. "With the younger individuals who contact us who grew up with this technology, we're definitely seeing people who initially stumbled across the violent far-right online and the same holds for men and women.

"Instead of having to be out in public in a giant rally or Klan meeting, individuals find hate online."

* Name has been changed

Amelia Tait is a technology and digital culture writer at the New Statesman.