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The Spreadsheet of Life and Death

2020/6/26
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Cautionary Tales with Tim Harford

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Clive Stone: 因无力承担昂贵药物的费用而无法获得治疗,这让他感到愤怒和不公,并促使他发起倡议争取权益。他亲身经历了医疗系统在资源有限的情况下做出的艰难抉择,以及个体生命在面对冰冷的成本效益计算时的脆弱。他最终选择自费治疗,体现了个人在面对生死抉择时的无奈和决心。 Tim Harford: 通过Clive Stone的案例,探讨了医疗资源分配的困境,以及如何评估生命价值的问题。文章分析了NICE在药物审批中的角色,以及政治因素对医疗决策的影响。同时,文章也介绍了John von Neumann和Thomas Schelling的理论,以及QALY等评估方法在医疗资源分配中的应用。 John von Neumann: 他的案例说明了在军事战略中,单纯的成本效益分析忽略了人的生命价值,这需要一个更全面的评估方法,不能仅仅考虑金钱成本而忽略人的生命。 Thomas Schelling: 他提出的“统计生命价值”的概念,为量化生命价值提供了一种方法,即通过人们愿意为避免微小死亡风险支付的费用来估算。这为在医疗资源有限的情况下做出更理性的决策提供了参考。 David Cameron: 他的竞选承诺和癌症药物基金的设立,体现了政治因素对医疗决策的影响,以及民粹主义在医疗政策中的作用。然而,癌症药物基金的实际效果和效率却受到质疑,这反映了在复杂的政策领域中,民粹主义和简单化的决策方法的局限性。

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Clive Stone, a retired bank manager with kidney cancer, campaigns for access to an expensive new drug, highlighting the ethical dilemmas in healthcare funding decisions.

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I will not stop until he is destroyed. Every soul is in peril. Shall we begin? The Lord of the Rings. The Rings of Power. New season, August 29th. Only on Prime Video. Freeland is a village in the English countryside, a few miles north of Oxford where I live. It boasts a 19th century church, a cricket team and a pub called the Oxfordshire Yeoman. It has about 1,500 residents.

In 2007, one of them, Clive Stone, went to see his doctor. Stone was a bank manager, recently retired. He'd joined the bank straight from school and worked his way up. Now he was concerned about a mysterious pain in his chest. Renal cell carcinoma is cancer of the kidney. If you have it, you don't normally discover that because you have a pain in your chest.

Nevertheless, that is what happened to Clive Stone, and the prognosis was bad. The diagnosis was a great shock to me, Stone later wrote. Both my wife, Jan, and I were regular walkers who kept ourselves fit with visits to the gym, and I was a swimmer. I could find no trace of any hereditary renal cancer in my family. Stone was only 59 years old.

There was some good news. A new drug that showed promise, sunitinib or sutent, had been approved in America the previous year. It wouldn't cure Stone's cancer, but it might extend his life. And then some bad news. Stone would not be offered the drug. It was too expensive. The UK's National Health Service, the NHS, refused to pay for it.

To Stone, that seemed wrong. He set up a campaign called Justice for Kidney Cancer Patients. That humble-sounding cause soon kicked up a storm, one that offers a lesson about how we make life or death decisions the world over. I'm Tim Harford, and you're listening to another Cautionary Tale. CAUTIONARY TALES

There are many ways to decide if a sick person can get a medical treatment that might help. The most common is, can you pay for it? Or will your insurer pay for it? In state-funded health systems such as the UK's NHS, it's, will the taxpayer pay for it? What the NHS will and won't pay for is guided by a body called NICE, the National Institute for Health and Care Excellence.

A new treatment comes along, like SUTENT for kidney cancer. It'll benefit some patients, like Mr Stone. But the British taxpayer has limited money and it's NICE's job to make sure it's spent wisely. It is an ironic acronym. The decisions the Institute must make are far from NICE.

Clive Stone and 100 fellow campaigners turned up at NICE's headquarters in Holborn, central London. They carried placards with the slogan: "Kidney cancer patients deserve the right to life". Among them was an outspoken talk radio host, a kidney cancer survivor himself. He had come along to lend his support. "I want the chairman of NICE to come down and speak to these people", he said.

I want him to look into the eyes of the people whose lives he would cut short. These faceless bureaucrats are trying to stop people's lives. To his credit, the chairman of NICE did come down and meet the protesters. Clive Stone told him, I'm dying. You're taking any hope away from me.

A few months later, NICE changed its guidance. Pfizer, the drug company which makes Soutent, agreed to lower the cost. NICE said the NHS could now pay for it, although only in certain circumstances. It depended what else might be afflicting the patient. By now, this was no longer about just one drug.

Clive Stone's campaign had caught on. All over the country, other patients with other kinds of cancer were pleading for the NHS to pay for their own expensive new drugs. Stone's work had also caught the attention of his local Member of Parliament, a man called David Cameron. Mr Cameron was suave, self-assured and young, just 39 years old when he became leader of the UK's opposition party, the Conservatives.

A general election was imminent and in the spring of 2010, Cameron faced off against the incumbent Prime Minister, Gordon Brown, in the first of the televised debates. Here's what he said. Cameron made a promise.

"Elect me," he said, "and I'll set up a special new fund to pay for cancer drugs." Clive Stone's kidney cancer had become political. How much money is society willing to spend to keep someone alive? What is a life worth? It's an uncomfortable question to ask. But what is a life worth is also an uncomfortable question not to ask.

Decades ago, one of the 20th century's most brilliant brains conspicuously did not ask it. His name was John von Neumann. Von Neumann was interested in game theory, computers and bombs. He was perhaps a little too interested in bombs.

Von Neumann is said to have partly inspired the most famous mad scientist in movie history, Dr Strangelove. In 1949, Von Neumann was working for the RAND Corporation, advising the US Air Force on military strategy. RAND had one of the very first computers, an EDVAC. You know the kind, it filled a room and cost a fortune. Von Neumann was using the computer to answer a very Strangelovean question.

What would be the most cost-efficient way to nuke the Soviet Union? You've had the computer variables about the number of bombs, the cost of different types of planes, land bases, logistics and so on. The computer crunched through 400,000 permutations and it showed von Neumann clearly what the US Air Force should do.

Imagine the conversation in the cockpit on a mission to bomb the Soviet Union if von Neumann's plan had come to pass. This plane feels so flimsy. Yeah, they were built on the cheap. We don't actually have a bomb on board, right? No, bombs are expensive. We're a decoy. Most of these planes don't have bombs. Why are there so many planes? Because even if the Soviets shot most of us down, the chances are some bombs will get through.

So you and I are likely to get shot down? Well, that's why they don't want to spend too much on the planes. It was a clever plan. Too clever by half, said Air Force chiefs when they read von Neumann's proposal. They were offended by the thought of sending their pilots on what was tantamount to suicide missions. Von Neumann's model had delved deep into the price of planes, but had completely failed to consider the issue of pilots' lives.

This was awkward. Rand could hardly insist that the pilots were expendable. Indeed, it's common to say that every human life is infinitely precious. But that can't quite be right either, because any jobs, such as that of an Air Force pilot, are jobs that bear some risk. If pilots' lives must be protected at all costs, the Air Force chiefs could never allow them in a plane at all. So...

The value of human life couldn't be infinite, and it couldn't be zero. It had to be something in the middle. Whenever the Air Force generals had to decide on approving a mission, they must somehow weigh the risk to pilots' lives alongside the monetary costs and the chances of success, even if they couldn't articulate exactly how they did it.

RAND felt sure that their awesome new computing power had the potential to improve that kind of decision, but only if they could figure out a way to plug pilots' lives into von Neumann's equations, alongside all those dollars and cents. And nobody at RAND had a clue how to do it. They were completely stumped. In the 2010 UK election, David Cameron's healthcare spending pledge paid off. He won.

And the new Prime Minister was as good as his word. Soon the Cancer Drugs Fund was up and running, with £200 million a year to spend. At the time, that was over $300 million. The next year, Clive Stone was honoured for his campaigning. The Queen awarded him an MBE, a kind of miniature knighthood, with Prince Charles pinning a medal on his chest.

Unfortunately, by now, Stone's wife, Jan, had developed a rare form of breast cancer, and Stone's own cancer had spread to his brain. Their wretched medical luck was just getting worse. AI might be the most important new computer technology ever. It's storming every industry, and literally billions of dollars are being invested. So, buckle up.

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How much is a pilot's life worth? The mathematical wizards at RAND kept scratching their heads. I know, what about the cost to the Air Force of training a replacement pilot? Hmm, maybe not. Somehow that didn't seem any less likely to offend the Air Force chiefs.

It was 20 years before there was an intellectual breakthrough on this problem of how to quantify the worth of a life. And it came from the pen of a Harvard-educated economist with a Nobel Prize in his future. Thomas Schelling knew that Rand's pilot problem was far from unique. Economists also needed a clearer way to think about situations where decision-makers have to balance prosperity with risks to life.

In 1968, Thomas Schelling sat down to write an essay on the worth of a human life. "This is a treacherous topic," he began. You can say that again.

Schelling considered all the usual ways one might try to value an asset, gently mocking how inappropriate they would be when applied to someone's life. The loss of future productivity, for example. If a Harvard professor dies, his family will miss him, and it will miss his earnings. We do not know which of the two in the end it will miss most, Schelling wrote, and if he died recently, this is a disagreeable time to inquire.

It was hopeless, Schelling said. Nobody can sensibly answer the question, how much would you pay not to die? But what we can do, and implicitly we do all the time, is to weigh up small risks, like a one in a million chance of death. Here's an example.

Your friend invites you for a weekend visit. She lives 100 miles away, so that's a 200-mile round-trip journey. Statistics tell us that driving 200 miles gives you a roughly one in a million chance of a fatal accident. Do you refuse to go, even though you'd like to see your friend? Of course not.

Few of us would let that risk deter us. We take it for granted. Economists now have a fancy piece of jargon for a one in a million chance of death. It's a micromort. So driving 200 miles is one micromort. It's 34 micromorts if you do it on a motorbike. Giving birth is 170 micromorts in the US. In a lot of European countries, it's safer.

Going under general anaesthetic is 10 micromorts. The fun stuff in life can be risky too. A day of skiing is half a micromort. Scuba diving is 5 micromorts. Hang gliding, 8 micromorts. But these are risks that we, or at least some of us, are willing to take. In some cases, jobs pose risk, and we're also willing to take those risks for a price.

In other cases, we might choose to pay for something that will reduce our risk of death, such as a bike helmet. The details are difficult. There are many situations like this and we don't always think consistently about them. But the principle, Schelling said, is quite straightforward and it gives us a sensible way to talk about the value of life.

First, determine as best you can how much people are willing to pay to avoid a micromort. Then multiply that figure by a million and that must be what we think our own lives are worth. In America, economists reckon that people value micromorts at roughly $10. That implies we think our lives are worth about $10 million. Schelling's idea is known as the value of statistical life.

Economists use that idea to advise on everything from pollution to product safety regulations to speed limits on the roads.

In 2003, the Bush administration floated the idea of putting more weight on saving younger lives. That kind of logic might lead us to put polluting factories in a part of town with more nursing homes rather than a part with more nursery schools. Or more generally, it might persuade us to accept risks to people who are already nearer the end of their lives. The logic is obvious.

But the idea was hugely unpopular. Critics dubbed it the senior death discount. It was quickly dropped. But in healthcare, it's standard practice to value younger lives more. Imagine you have two patients who need a heart transplant and only one donated heart. Do you give the transplant to the 19-year-old or the 91-year-old?

Or flip a coin. I think most of us would give it to the teenager. Medical resources are seldom unlimited and doctors have to prioritise somehow. So economists in the health sector came up with a different method to try to formalise the kind of intuition we have about the heart transplant. They ask how long a given treatment might prolong a patient's life, along with the quality of that extended life. The jargon here is QALYs. That's Quality Adjusted Life Years.

The reason Clive Stone initially couldn't get the drug treatment he wanted was in large part because NICE had calculated the cost per quali was too high. And now Mr Stone was bumping up against the brutal logic of the spreadsheet once again. Stone's brain tumours could be treated with something called gamma knife surgery, a kind of highly targeted radiotherapy.

NICE said the NHS could pay for it sometimes, but not when patients had a poor prognosis from other cancers. It wasn't worth it. Not enough QALYs. What about the new fund that David Cameron created? It existed precisely to pay for treatments that NICE wouldn't approve. Could it fund Stone's treatment? But no. The fund was for drugs, and Stone didn't need a drug, he needed surgery.

In a cruel irony, the fund he'd inspired couldn't help him. But surely that was a loophole that should be closed. Stone went back into campaign mode, reaching out to the Prime Minister, David Cameron. But he couldn't take a chance on waiting for a change in policy. Stone was a widower now. Cancer had taken his wife, Jan, quickly. She didn't get to meet her first grandchild. Stone wanted to stick around.

he decided to pay for the surgery himself. I know I've got a limited time left, but apart from this ticking time bomb in my head, I'm feeling fit and well. I just want to keep going for as long as I can. Economists are paid to grapple with trade-offs between money and life, but for many people, it's a taboo subject. The temptation is to say, we must save lives, and shut down the conversation.

And not everything is a trade-off. When COVID-19 arrived, it was never an option to let the virus run wild. That would have crashed economies more surely than any lockdown. But there are trade-offs. We can't pretend there aren't. Every easing of a lockdown means more risk of infections and deaths. How many deaths are we willing to accept to let schools open and give children the education they desperately need?

What about swimming pools? Coffee shops? Hair salons? We could view lockdowns as a kind of risk-reducing regulation and think about micro-morts and the value of a statistical life. That would imply every death is worth paying $10 million to prevent. Or perhaps we should view lockdowns as a kind of public health intervention and factor in how the virus poses different risks for different ages.

In the UK, NICE typically values a single QALY, a single year of a quality life prolonged, in the range of $30,000. COVID-19 poses vastly more risk to the elderly. So if we're thinking through the lens of quality years of life remaining, our decisions about how to proceed change drastically.

Or maybe we need a new measure altogether. As the UK pondered how to ease its lockdown, a group of academics came up with a new proposal. Not a QALY, but a WellBe. A WellBeing life year. It tries to fold in figures for things like mental health. Is it the right approach? I don't know.

but it does at least try to ask the right questions. I realise the spreadsheet method seems repugnant to most of us, but as John von Neumann discovered, we can't ignore the trade-offs. In the end, we have to balance the risks to life against the things that make life worth living. The Cancer Drugs Fund was a popular policy.

UK media coverage was positive. Sure, there were some who grumbled that it was diverting money from other parts of the NHS, but the biggest criticism was that it wasn't spending enough. Over six years, the Cancer Drugs Fund bought drugs for almost 100,000 cancer patients. In 2017, researchers looked at how effective it had been. It turned out that four-fifths of the drugs it bought had no clinical benefit at all.

The drugs that did have effects often also had side effects. They extended people's lives on average by a little more than three months. Those were precious months, no doubt. The cost was £1.27 billion, not far shy of $2 billion. For that money, you could easily hire 10,000 nurses. How can we decide if the money would have been better spent elsewhere? The researchers used QALYs.

They reckon the same amount could have done five times as much good if it had funded other treatments for other patients with other conditions. Professor Richard Sullivan, who led the research, said the fund had been a major policy error and a huge waste of money. What had gone wrong? Remember the cancer-surviving talk show host who said the faceless bureaucrats were trying to stop people's lives? It's an emotive quote, but wrong.

Nobody was trying to stop anybody's lives. The bureaucrats were trying to decide how to spend a limited pool of money where it would be likely to do most good. They were doing their jobs. David Cameron must have known that. He's a smart guy. So it's hard to avoid the conclusion that making Clive Stone an election issue was a cynical calculation.

As the researcher Richard Sullivan concluded, populism doesn't work when you're dealing with complex areas of policy like this. It was politically and intellectually lazy. But in the end, the blame's on us, the voters. We make it very hard for our societies to have cool and rational conversations about life and death decisions. Studies of media coverage point out that new cancer drugs tend to get a disproportionate amount of hype. Nobody wants to grumble about the cost.

And as the pandemic has taught us, we all want to hope for miracle cures. By the time the report on the Cancer Drugs Fund came out, David Cameron was no longer Prime Minister. He'd resigned after losing a bitter referendum campaign over Brexit. Three weeks before that crucial vote, he took time out from the campaign to talk to his local newspaper, the Oxford Mail. They wanted a quote about a constituent who'd died, and Cameron was happy to oblige.

Clive Stone was an inspiration to me and I'm sorry to hear of his passing. He was an amazing man who made such a difference to so many people's lives, Cameron said. Clive Stone's story was brave and tragic. It's hard not to react with emotion, but if we're judging policy and politicians, we should try.

Our sources included an article on the Cold War origins of the value of statistical life by Spencer Banshaff, and on personal testimony on the Kidney Cancer Support Network website written by the late Clive Stone. As always, a full list of our sources is in the show notes on timharford.com.

Cautionary Tales is written and presented by me, Tim Harford, with help from Andrew Wright. The show was produced by Ryan Dilley with support from Pete Norton. The music, sound design and mixing are the work of Pascal Wise. The scripts were edited by Julia Barton. Special thanks to Mia LaBelle, Carly Migliori, Heather Fane, Maya Koenig, Jacob Weisberg and Malcolm Gladwell. Cautionary Tales is a Pushkin Industries production.

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