Blood deferrals – too important to take personally

Originally published in the Daily Maverick

14983260-blood-donation-medical-buttonOne of the things that allowed this species to survive into the 21st century is our ability to detect patterns, and to make predictions based on those patterns. If you were a hunter, you’d have needed to be able to predict the movement of the beasts you hunt with some degree of accuracy. If you were a farmer, some rough understanding of seasons would have been rather useful, lest you waste all your seed, your water, and all your effort.

We’re here and it’s 2013, which means that our forebears got these sorts of things right with reasonable regularity. Sufficient numbers of them managed to feed themselves, and avoided walking off the edges of cliffs or getting eaten by carnivores. But all of that pattern-recognition and the accompanying storytelling can be a liability, in that it gets in the way of our realising that we are simply one data point, usually interesting only to ourselves and our immediate circle.

And, it gets in the way of seeing other potential stories. Not just the stories of others (helping us to escape our subjectivities), but also the story the data tells by itself, without our fears, hopes, and histories being allowed to corrupt it.

You know your own examples, but the sorts of corruption I mean would include our thinking that problem gambling is significantly prevalent in South Africa just because Aunt Sally has a problem. It’s not, at least not by international standards. Or, when your cold goes away a couple of days after taking some homeopathic remedy, when your confirmation bias allows you to ignore the fact that a cold typically only lasts for a couple of days in any case.

The storytelling I speak of is not just in ascribing patterns to potentially unconnected events, but also in finding intentionality or causality where none might exist. Intentionality, such as that we imagine when describing a tragedy as part of “God’s plan”, because doing so helps to shield us from the fact that we are meaningless. Causality, of the sort we might think we’ve found when some sort of “lucky” token or behaviour correlates with a random moment of good fortune.

The cognitive rules of thumb (or heuristics) that we use in developing these responses served a purpose in allowing us to get this far, and still serve a purpose today. But we no longer need to be as reliant on them, and are increasingly irrational when we do so, because the volume of data available to us is mostly far better suited to analysis by machines than by humans.

The South African National Blood Service illustrates the problem well, introducing all sorts of moral complications at the same time. As reported in the Cape Argus, a gay couple recently had their blood donation deferred (or rejected), thanks to the SANBS policy of deferring donations from men who have had sex with other men in the last six months.

One narrative that fits this policy is that the SANBS is homophobic, and this narrative has enjoyed strong support on social media for the last few days. But as I wrote in a 2011 column, deferring blood from this category of donor isn’t atypical, and South Africa’s blood service is in fact fairly liberal in this regard. In the UK, the deferral period is one year, while in the US a lifetime restriction applies for men who have had any sexual encounter with another man at any time since 1977.

Now, there’s no principled reason why we should think the US or UK a good guide to policy in this or any other instance. But there’s also no reason to be guided by the perception of discrimination based on moral judgement, where the discrimination might instead be based on cold, impersonal data.

As I note above, this is exactly the problem: we struggle to think of ourselves as mere data points, and instead wish for the world to bend to shape our anecdotal experiences (or anecdata). I have little reason to doubt the statistics reported – across various international jurisdictions – on the Centers for Disease Control website, or the FDA’s reasoning for why they defer blood donations from men who have sex with other men.

The statistics show that this group are “at increased risk for HIV, hepatitis B and certain other infections that can be transmitted by transfusion”. This claim is either true or false, and whether it is true or false is not a matter of morality or preference – just like it’s either true or false that tattoos and body piercings lead to increased risk of hepatitis C (the current motivation for a 6-month deferral period in Canada).

So, we can either contest the claim on empirical grounds, and refute the claim of increased risk from blood donations from men who have sex with other men, or we can claim inconsistency, saying that if this is true, that there is also increased risk from heterosexual couples who have anal sex.

In a recent interview on CapeTalk567, a representative of the SANBS seemed to concede the possibility of this sort of inconsistency, saying that they would be considering this in the upcoming revisions to their donation forms.

But even if this inconsistency is borne out by the data – in other words, if other categories of donor exist whose blood donations are, in general, at least as (or more) dangerous than this category is – this wouldn’t mean that more gay men should donate blood. It would mean that they still shouldn’t, and that neither should some other people. So the complaints to the SANBS regarding discrimination are never likely to bear the fruit that some potential gay donors are hoping it does, unless it’s empirically false that this category of donated blood is more risky.

My use of the word “shouldn’t” (as opposed to couldn’t) in the previous paragraph alludes to an important point. As much as we’d all like to give blood, another aspect of treating ourselves as a data point – at least when thinking about public policy – is that we’ve got very strong reasons for wanting to be able to trust that we could receive donated blood safely. So the issue of which deferrals are legitimate, and which are not, is important enough to merit resolution by careful reflection and analysis, rather than to simply be the subject of this week’s bout of righteous indignation.

Sometimes we’re just like the rest of us

As submitted to Daily Maverick

We’ve read plenty of opinion in Daily Maverick on Premier Zille and HIV in recent weeks. And while encouraging thinking and debate on HIV and Aids is crucial, emotive topics such as this lend themselves quite easily to caricature – perhaps especially when protagonists in the discussion describe opposing views using hyperbolic labels such as “fascist”.

In Sipho Hlongwane’s column linked above, he asks whether Zille’s followers agree with her views on criminalising HIV and if not, why their opposition is mostly silent. While I reject the implicit association of a political party and its policies with one individual’s views (even if that individual is the party’s leader), I’ve expressed my opposition to those views in a previous column.

A broader issue raised by both the idea of criminalising HIV transmission as well as something like the Get Tested campaign is the extent to which scientific knowledge should inform policy. To put the issue that baldly might lead to some shaking of heads, in the sense that it might seem obvious and unworthy of debate that our scientific knowledge should inform policy.

But judgements often need to be made, and regardless of what the facts might be, we know that many – perhaps the majority – of votes are cast on the basis of perception. This is part of the reason that it becomes plausible to accuse a leader of populism, as some critics of Zille have done in this instance, or for her to accuse critics of fascism or “slacktivism” (itself often a grossly unfair charge, in that the only voice most of us have comes from behind our computer monitors, from where we are typically not able to control the budgets of state organs).

What I mean is this: On the one hand, the issue of whether criminalising HIV is a good idea or not could be regarded as a simple one, answerable though data telling us whether doing so results in fewer cases of transmission. With Get Tested, we could ask whether the campaign results in more people knowing their status, thereby potentially entering the treatment and counselling net. (Briefly, on the topic of Get Tested, I must regretfully withdraw some of my previously expressed support for the campaign, now that we know that baseline figures for testing rates pre-Get Tested are not available – meaning that we have no way of knowing how effective the campaign has been.)

On the other hand, the issues can never be this simple, because even if we all agree that control of the HIV epidemic is our most pressing concern, other values can nevertheless limit our pursuit of that goal. But what if the data did show that criminalising HIV transmission actually worked, or that Get Tested resulted in a 10% increase in the number of people who were tested for HIV? Would opposition to these measures cease?

My suspicion is that they will not, because we seem reluctant to trust the data to inform policy above all else, and because we’re unwilling to regard ourselves as one trivial data point in the aggregate. We’re of course not trivial to ourselves, and justifiably fear (for example) the imposition on our time that mandatory HIV testing would entail. At the same time, we might be perfectly happy for our sexual partners to engage in such testing, and to hypocritically insist that they do so.

In other words, we assign individual agency a greater value than we do the collective good. Which is as it should be much or even perhaps most of the time, at least if you subscribe to broadly liberal principles. But liberal-minded folk are still part of that collective, and can sometimes benefit more as individuals by focusing on the good of that collective, seeing as there are so many more of them (capable of doing you harm or good) than there are of you.

One particularly interesting test-case involving this conflict between perceived impositions on individual liberty versus the good of the collective is blood donation; and in particular the question of whether the South African National Blood Service and their international equivalents should accept donations of blood from homosexual men.

Gay men who have had oral or anal sex with another man in the last six months (whether protected sex or not) cannot donate blood in South Africa. In the UK, the deferral period for this category of donor was recently reduced to one year, while a lifetime restriction still applies in the USA for men who have had any sexual encounter with another man since 1977.

The phrase ‘category of donor’ is key to the issue I am raising here: We don’t easily think of ourselves as belonging to a category, no matter how clearly the data shows that people of type X, or who engage in behaviour Y, on aggregate merit treatment Z. This is the curse that actuaries have to bear: Their models that price our insurance premiums or motivate for medical interventions such as those mentioned above are in constant competition with the Pythonesque reality of all of us insisting in unison that “We’re all individuals”.

But laws or insurance premiums can’t be tailored to individuals. As much as we are individuals to ourselves, interventions intended to work on aggregate have to treat us as belonging to a category – and the question then becomes how those categories are defined. And here, we need to start thinking about the least wrong way of doing this, and perhaps being more willing to tolerate principled ways of treating us simply as a number.

Legislation based on one person’s moral viewpoint, in opposition to the available evidence, is far closer to most wrong than to least wrong. And science utterly divorced from morality offers its own nightmares, as a Twitter friend reminded me in a conversation on this topic. I’ll return to the specific case of blood deferrals for homosexual men – and other “categories” of human – in a future column.

For now, though, the concern is this: Seeing as most of us know little about science beyond misleading headlines, and our understanding of morality is largely subjective, perhaps more of us should be willing to respond as that lone voice in the crowd did in Monty Python’s Life of Brian. When Brian told the crowd “You’re all different!”, and they responded “Yes, we are all different!”, his muted response was simply “I’m not”. And neither, most of the time, are the rest of us.

Premier Zille is nudging people to Get Tested

As submitted to the Daily Maverick

As T.O. Molefe pointed out in a column last week, we can legitimately question whether a campaign like Get Tested will have any long-term effect on the willingness of South Africans to get tested for HIV. Launched by Premier Helen Zille to coincide with 16 Days of Activism for No Violence Against Women and Children, Get Tested offers a financial incentive for knowing your HIV status. Anyone who volunteers for HIV testing between November 28 and December 9 stands a chance of winning a first prize of R50 000 or one of five R10 000 runner-up prizes.

You might recall that Zille attracted a significant amount of criticism for her stated intentions of criminalising HIV transmission. As was the case then, an apparent problem with Get Tested is that according to Molefe, it tries “to achieve individual thought and responsibility by taking away thought and usurping responsibility”. Furthermore, Molefe draws on the work of Daniel Pink in arguing that the effects of the incentive will only be short-term, falling away once the prizes are no longer available.

Both of these criticisms are to my mind at best not compelling, and at worst unfounded. While it’s true that behavioural economics is a contested science, the contestation more typically relates to whether findings in experimental conditions cross over into informing policy in the real world, and to whether the rise of “choice architects” – in other words, those who design the “nudges” – present an illiberal incursion into our freedom to choose.

Pink’s claim that carrots and sticks are less effective, and potentially harmful, in addressing complex 21st century problems raises questions relating to the design of these nudges. These questions don’t however rule out the potential usefulness of nudges. If the desired behavioural change depends on tweaking complex motivational forces, we might struggle to achieve it – but there seems little difference in kind from more simple behaviours. The question is one of degree only.

Of course, there might be problems too subtle to address via these sorts of nudges, but given that we’re talking about a science that arguably only came into existence in 1979, with Kahneman and Tversky’s “Prospect theory: An Analysis of Decision Under Risk”, it seems rather hasty to claim that the experimental work conducted by George Ainslie, Gary Becker and a host of others has been premised on problems already superseded by newer and more complex ones.

Despite this question, it remains true that our models of intertemporal choice behaviour and hyperbolic discounting (in this context, the choice habits that could result in people being tested now for the chance of winning money, instead of for their own long-term benefit) are imperfect. They could perhaps even be critically flawed, and as I mentioned earlier, applicable more to experimental conditions than to real-world policy.

But the successes of these sorts of interventions – at least on pragmatic criteria – seem to be far outweighing their failures. Long-term trials such as the 3-year J-PAL immunisation intervention in rural India have been tremendously successful. Offering parents 1kg of lentils and a set of metal meal plates upon completion of a course of immunisation for their child resulted in a more-than-doubled immunisation rate at half the cost, thanks to economies of scale resulting from increased uptake.

There are similar tales of success with HIV testing in South Africa. The 2008 intervention by the Men By the Side of the Road charity, which offered unemployed men R75 to test for HIV had a 100% uptake in the group it targeted, along with a waiting list in the thousands. The Discovery Health/Sunday Times Right to Know campaign (July 2008 to June 2009) attracted 55 000 volunteers for testing, thanks to the promise of one person per month becoming R100 000 richer.

But the question is of course sustainability, and whether these incentives have a long-term impact on behaviour. And here is where I’d urge Zille’s critics to a little more temperance, in that if relatively low incentives of one R50 000 prize and five R10 000 prizes end up resulting in significantly increased rates of testing, the R100 000 total spend could end up being a very worthwhile (and sustainable) investment, given that the Province currently spends a reported R661 million on its HIV/AIDS programmes per year.

What of the criticism that choice-architecture of this sort is somehow grossly illiberal, “taking away thought and usurping responsibility”? First, it’s perhaps worth noting that the liberal goal of securing freedoms is surely maximised by both good health, and by decreasing expenditure on preventable diseases so that the funds can be used elsewhere. The question is how we secure those goods, and whether we impinge on liberties excessively in doing so (as we would do by criminalising HIV).

While it’s true, as Molefe says, that HIV testing should be its own incentive, I’d suggest that those of us who know this already get tested. Offering people the chance of a cash prize for HIV testing can only increase the likelihood that any first-time testers can be exposed to that message, resulting in a probable net gain in terms of awareness. It’s not the case that the Get Tested campaign is replacing ordinary awareness campaigns – it’s a supplement to them, and one that seems worth trialling given its low cost.

Furthermore, it’s a supplemental sort of intervention that is widely accepted, rarely attracting the sort of criticisms Zille is confronting here. What, for example, do critics of choice architecture think of Discovery Health’s Vitality programme, which by Molefe’s reasoning “sends the unintentional message that [good health], something which is an incentive in itself, is so abnormal and exceptional a behaviour that those who get tested are entitled to a reward”?

While nudges like the Get Tested campaign are sometimes accused of violating human autonomy, it’s difficult to be sympathetic to these charges. South Africans retain their choice to be tested or not – and if some who would otherwise not be tested now come forward, they do so because they autonomously desire money. Their exercising that autonomy is potentially to all of our benefits, given the level of public expenditure on AIDS.

In short, the harms of Get Tested are unclear while the possible benefits are not. Given that it will cost us little in terms of money – and nothing, as far as I can tell, in terms of liberty – we should give it a chance. If it ends up working, some of those entitlement horses might eventually end up being able to find their own way to the watering-hole.

Helen Zille on HIV

As submitted to The Daily Maverick

It’s easy to understand why the Premier of the Western Cape, Helen Zille, wants to do something to minimise the prevalence of and costs associated with HIV infection. According to her remarks at a wellness summit earlier this month, HIV treatment costs the provincial government close to R2 billion per year – and that is no small sum to spend on a preventable disease. Her proposed solution to this includes wanting to charge men who have unprotected sex with multiple partners with attempted murder.

In an interview with John Maytham on CapeTalk567 on November 9, Zille presented three complementary measures for minimising the problem of HIV infection: compulsory testing, compulsory disclosure of HIV status to potential sexual partners, and compulsory wearing of condoms in non-monogamous sexual relations. We were told that she desires for these measures to become law, and that similar sorts of responses to AIDS had been effective in various other jurisdictions.

There is much one can agree with in terms of her motivations – even if not in terms of the proposed remedies. It is in all of our interests to have public funds spent in the most effective possible ways, and it’s also normally in our interests to safeguard ourselves against threats to our health. But we pursue those interests unreliably and sometimes irrationally. Humans are disposed to something called hyperbolic discounting, namely the preference for smaller but sooner rewards over larger but later rewards.

What this means is something we all know well – thinking we’ll go to the gym, stop smoking, or start eating more healthily tomorrow. We’re enjoying it now, and we find it easy to discount the long-term costs of satisfying our immediate desires. This is not to say that it’s obligatory to care about your own health or longevity. It would certainly be weird, but not impossible to imagine being enough of a hedonist that you commit yourself to a shorter but more Bacchanalian life, understanding the potential consequences in full.

The concern raised by Zille is that we might be accused of excusing or forgiving reckless behaviour by funding treatment of its consequences from public coffers. While the state guarantees the right to medical treatment, the argument was made that these rights entail certain responsibilities – namely those three responsibilities outlined above.

But this conclusion would be somewhat hasty. While the idea that “rights entail responsibilities” seems axiomatic to many, it isn’t quite true. A positive right, where something is provided (such as a right to healthcare), is provided by the state as an obligation funded by our taxes. It’s certainly regrettable that we cause inefficient spending of that money through poor choices, but those poor choices don’t make us liable for an increased contribution to healthcare funding.

Leveraging that regrettable inefficiency into changed behaviour is a moral issue, but not one that can easily be legislated (whether doing so is desirable or not). We can try to persuade people to live healthier lives – for their own good as well as for the good of efficient healthcare spending – and we can try to guilt them into not allowing their preventable conditions from swallowing a disproportionate share of available funds.

However, if HIV infection following unsafe sex should become your legal responsibility to avoid, one can start to wonder where these sorts of responsibilities would end. I don’t have to have a car accident for alcohol consumption to become a cost to the state. I could drink to excess most nights in the safety of my own home, and still eventually require treatment for cirrhosis. Likewise for smoking and lung cancer or emphysema, and of course for my dietary choices also, where my diabetes or high cholesterol end up requiring expensive medication, surgery, or both.

These things might differ in scale, but not in type. It’s easy to find examples of self-inflicted harms that cost everyone else money through public provision of treatment, and it serves us well to try and eliminate all of them. But doing so always comes at a cost, and that cost can be a significant erosion of our liberty. We could, for example, require that everyone hand their car keys to the restaurant host, to only be returned on your successfully passing a breathalyser test. We don’t do this because of the belief that it’s appropriate to punish people for actually causing harms to others, and not appropriate to regulate their lives to the extent that it becomes impossible for them to cause those harms.

It’s not only concerns regarding the erosion of liberty that should make us wary of calls to criminalise unsafe sex in general, or force us to be tested for HIV. Readers of The Daily Maverick would mostly be in the position of having ready access to medical care, including things like HIV testing. It could be performed as part of an annual check-up, or even provided at the workplace. But this won’t be the case for the rural poor, meaning that the state would have to spend the money to roll out nationwide testing – or inadvertently make it the case that being poor automatically means being a criminal under this sort of legislation.

Then, it is also not clear that criminalisation of HIV does any good, despite Premier Zille’s claims to the contrary. Edwin Cameron’s 2008 paper in the Journal of the American Medical Association makes reference to a study comparing HIV infection in Illinois (which requires HIV disclosure and criminalises sex without informed consent) and New York (which has no such laws). No statistically significant difference in sexual behaviour was found in this comparison – and this in a country with significantly higher literacy than ours, and also one in which myths regarding HIV and its spread are largely absent.

There is also a stigma attached to HIV, and its criminalisation cannot but exacerbate that. Cameron points out that:

Tragically, it is stigma that lies primarily behind the drive to criminalization. It is stigma, rooted in the moralism that arises from sexual transmission of HIV, that too often provides the main impulse behind the enactment of these laws.

Even more tragically, such laws and prosecutions in turn only add fuel to the fires of stigma. Prosecutions for HIV transmission and exposure, and the chilling content of the enactments themselves, reinforce the idea of HIV as a shameful, disgraceful, unworthy condition.

This is not to say that we shouldn’t criminalise knowing infection of others with HIV, just as other sorts of intentional harms to others are criminalised. As I started out by saying, one can sympathise with Premier Zille’s frustrations, and her desire to go further than this. HIV and AIDS are significant problems, and large sums of money are being spent on treatment that could instead be spent on the treatment of unpreventable medical conditions. But addressing this one – HIV – with the force of law requires something like a camera in every bedroom, and could also be accused of unfairly targeting the poor and women.

Public awareness and understanding of the harms we can do to each other and our responsibilities to avoid those harms takes time to generate, especially in a context where under-education and mythology – in this area as well as others – abound. We need to keep informing and educating, but the law is too blunt an instrument to arrest HIV without compromising other values we hold dear. To think that it’s our best recourse seems utterly wrong-headed, and just about as crazy as believing that you live in a haunted house.

Also read Gavin Silber and Nathan Geffen on this topic.

Patrick Holford’s feel-good quackery

As submitted to The Daily Maverick.

At times it appears alarmingly easy to be considered an expert in any given field. This is sometimes the case even when objective criteria for expertise are available, and you manifestly fail to meet them. Granted, there are some fields of knowledge where consensus is difficult to reach, and where equally qualified people can have opposing viewpoints. But this is rare, and (thankfully) becoming steadily more rare. Continue reading “Patrick Holford’s feel-good quackery”

Patrick Holford supports Malema!

No, not really. I was just trying the TimesLive and Sunday Times strategy for getting hits, whereby you headline a piece with something very misleading, perhaps even false. But it is at least partly true that Holford supports Malema, because Holford cares about all of us – especially our health, which he believes he can improve via dietary advice, and of course via your purchasing of his various branded products.

Unfortunately for some of us – particularly the ones with HIV, Holford also endorses the notion that “AZT is potentially harmful and proving less effective than vitamin C” – a notion which comes from Dr Raxit Jariwalla, who works for the Matthias Rath Foundation. I’ll write more about this next week for The Daily Maverick, but in the meanwhile, here are the places to avoid if you don’t want to hear Holford giving bad advice, or run into any his cultish supporters. Or, the places to flock to, if you intend to heckle.

Though, if you do intend to heckle, you should know that you’d be disagreeing with at least some experts in dismissing Holford’s credentials. On his website, in the section on “What the experts say”, there’s this:

Patrick Holford is one of the world’s leading authorities on new approach to health and nutrition.

The expert in question? The Daily Mail.

Thanks to Twitter user ORapscallion for alerting me to the visit of this quackmeister, and of course to Radio702 / CapeTalk567, who I hope are spending this ad revenue on AIDS-related charities. I mean, surely they must be, being behind the #LeadSA campaign and all.