Public Health Arguments and Civil Rights Protections

For some time now gay civil rights (aka gay rights) activists have argued that same sex relationships and conduct should be decriminalized because evidence shows that in societies that don't do so there is a higher prevalence of HIV among gay men.

Let there be no doubt, the latter claim of fact is true. There is a fairly substantial body of social science evidence demonstrating that. Opponents of gay rights typically point to that higher prevalence - even in societies that have decriminalized - to bolster their opposition. They usually argue that if their society decriminalized same sexual relationships  (aka buggery, to use that lovely colonial phrase invented by the Brits) even more folks would engage in that high risk behaviour and things would get worse on the HIV fronts. That isn't true, demonstrably so. This will have little impact on these campaigners' messaging, because they're god people. Their opposition to homosexuality is driven by religious convictions plus almost certainly deep-seated other psychological issues. After all, these are the same people that like equating pedophilia and homosexuality. Evidence for that claim is also difficult to come by. There's a method to this madness though, and it's a successful madness. Whole countries (Jamaica and Uganda are just two examples) these days are in the thrall of moral panics when it comes to the matter of homosexuality.

Now, gay rights activists have resorted to engaging in similarly flawed arguments to further their political objectives. To be fair, unlike god people they at least have some evidence on their side (i.e. homosexuality isn't pedophilia, criminalization leads to higher HIV prevalence). However, none of that creates a case for gay rights. At least it shouldn't. Civil rights cannot be contingent on non-immutable characteristics. What if it turned out to be the case that decriminalization of homosexuality led to higher HIV prevalence? Should one then join god people and their campaigns? Civil rights case closed? Obviously not. The case for civil rights cannot be based on public health arguments.

The case for civil rights protections is always and necessarily so based on individuals' liberty entitlements to live their lives as they see fit, as far as self-regarding actions are concerned, on privacy rights, their right to associate with whoever consenting adult(s) they see fit, their entitlement to see their needs treated equally to comparable needs that led to rights heterosexual people enjoy, and a gaggle of other related arguments. None of these arguments are contingent on the truth or otherwise of particular public health matters. After all, where would one go once it was possible to eradicate HIV with a simple pill being taken, or once a working preventative vaccine existed? Too bad for gay rights then? I think not.

That's not to say that opponents of gay rights should not be called on their lies and deception. However, by turning their arguments on their head no case is made for gay rights either.

Addendum: 12:29pm, July 25, 2014 EST.

Of course, it is true that civil rights protections also extend to certain kinds of choices (e.g. religion) as well as other not immutable characteristics such as language. I stuck to immutable because that case is easier to make and it applies to homosexuality.

Conference ethics - my take on the AIDS talkfest 2014

At any given time there are thousands of large conferences held all over the globe. Many of these conferences are mere make-belief, they are set up by conference organisers in hope of extracting good money from conferences goers in order to make a profit. They are not infrequently organized by equally dodgy open access outfits in the publishing industry. I won’t mention names here, but you know who you are.

Then there are other conferences where one wonders why they still exist in the form and shape in which they are held. A case in point is the International AIDS Conference. This biennial event was held in 2014 for the 20^th time, this time in Melbourne, Australia. In the old days the location of this conference was considered to be an important political decision, as its mere magnitude guaranteed the AIDS community in the host country a high public profile for their cause. The good and great would come to address the conference (Bob Geldof and Bill Clinton offered the necessary glitz in Melbourne) and say nice things about people with HIV/AIDS and – more recently - the need to provide affordable medicines to people in developing countries. Well, that was after the advent of life-preserving medication. Prior to that there was a much more real sense of urgency, people fought over trial designs and the meaning of however fragile trial outcomes and unjust discrimination against people with HIV and AIDS. One conference, held in South Africa, was addressed farcically by an ANC government representative steeped in deep denial about the role of HIV in AIDS.

Today AIDS is primarily a disease killing the world’s poor. That’s true for the USA, but really this uncomfortable fact holds true for the global south. Access to affordable medicines has greatly improved, but millions who could clinically benefit from HIV medicines have to date no affordable access. Worse, the economic crisis in the West meant a scaling back of donor programs, leaving those who managed to access life-preserving medicines in some instances with unexpectedly having nowhere to turn to due to program closures. A great deal of managerial incompetence and corruption in countries in sub-Saharan Africa means that people in need of HIV medicines are not receiving them. Preventable deaths occur frequently.

Given this background, holding a conference such as this in Melbourne, Australia, of all places, truly borders on the absurd. Between 14,000 and 16,000 conference goers flew from all over the world to attend this latest AIDS talkfest in a rich location where HIV/AIDS, frankly, affects a fairly small, very well clinically cared for number of people. Much as I appreciate the joy that must come to North American and European conference goers from travelling to Down Under, this has been a truly bizarre location to hold this conference in.

Nothing much was truly achieved by this giant assault on our environment courtesy of thousands of academics and activists circumventing the globe to talk to each other in an endless stream of sessions and meetings. In the age of email and tools such as Skype that could have been achieved with less environmental destruction.

So, talking about conference ethics (I will trademark this term!), is it unreasonable to ask of organisers of such conference to consider only locations where actually large numbers of people still fight to survive this disease and perhaps give locations a miss where AIDS has become a manageable chronic condition, and where the civil rights of HIV infected people are thankfully well protected?

I quietly assumed to this point that much is served by holding such gigantic meetings at all, alas I am skeptical. After all, relevant clinical research will be published quickly in relevant journals these days, the time delay is negligible, researchers will know each other by means of email or Skype or teleconferences. Activists worth their money would have figured out ways to let their donor monies go further by not attending these talkfests and spending the cash instead on actual work aimed at furthering their objectives.

Guess if travellers in the AIDS business need to travel - usually on other's dime -  at least they ought to travel to places where much work needs to be done, not to places that are comparably well-off. Perhaps not as nice as Melbourne, but slightly more justifiable.

AIDS activism commuted death sentences but its spirit is lost

Here's a piece I had over at The Conversation.

For those of us who were around when the HIV pandemic started in the west, How to Survive a Plague, a newly released film about AIDS activism in the US and the fight for more research is an especially difficult, if not distressing documentary to watch. People in this group will recall how friends in their early 20s and 30s died horrible deaths and there was just nothing anyone could do about it.
American AIDS activism taught us a number of important lessons – lessons that go far beyond the treatments we now have for AIDS. These activists, many of whom were HIV positive, knew that they would be consigned to the same terrible deaths that they had watched happen to friends and loved ones go through unless they were able to get their hands on medication to keep the virus that was killing them in check. On the other side were intransigent governments unwilling to fund clinical research aimed at finding a cure, or at least a treatment that would keep HIV under control.
Two successive Republican presidents, Ronald Reagan and George H. W. Bush, really couldn’t have cared less about gay men dying of an infectious disease. As Bush, his that time best mate, Republican Senator Jesse Helms, and the Roman Catholic Church put it, it was just a matter of us changing our “lifestyles” and everything would be hunky dory again.

Death focuses the mind

The film follows the ACT UP movement in New York City, which demanded large-scale and concerted research into AIDS. Its activism in those days fought first and foremost the clinical trials and drug approval system. Trial designs all too often were unconcerned about trial participants’ survival. If your only way to access promising experimental anti-HIV drugs was by participating in a clinical trial, randomised trials that asked you to accept a 50:50 chance of getting a placebo weren’t good enough.
While this might have been a sound research method, try telling someone who is dying that they have a 50% chance of ending up with a sugar pill. AIDS activists didn’t accept this lying down. They were also not prepared to wait for years for AIDS drugs to make their way through the drug approval system, because that bureaucratic course was itself a death sentence. AIDS activists, supported by a growing number of scientists, made themselves highly knowledgeable about scientific matters as well as regulatory issues to make the drug research and development system one that served their survival interests. Knowledge is power.
What’s missing in the film is that this led to interesting alliances. Old school Republican Pat Buchanan, for instance, is shown in an old CNN clip agreeing with ACT UP’s Peter Staley that people with AIDS should be able to access experimental drugs. But what we don’t see in the film is that pharmaceutical companies began bankrolling some of these activist groups because they were also interested in getting their drugs to the market quicker. AIDS made for some fascinating coalitions.
While political AIDS activism undoubtedly changed the system for the better, I’m not sure that much of this is actually replicable when you think about patient activism today. AIDS was unique in that it hit a population that was used to political activism. Gay people in those days were already accustomed to fighting for recognition of our basic civil rights and it was a been-there-done-that type thing for many AIDS activists. Many were also very well educated, fairly young, and had little to lose. Death focuses the mind as they say.

Public spectacle and political act

Any film about AIDS in the 1980s and 1990s will inevitably be about death and dying. And Survive A Plague is harrowing to watch as over the course of the film we watch some of the protagonists wither away and eventually die. Others who actually did survive spoke at the time very matter of factly that they couldn’t imagine surviving AIDS.
Dying became a public spectacle. And it became a political act. The annual events that went into creating the AIDS Quilt were huge. The quilt, which began in 1987 to carry a message of remembrance and hope, now has over 48,000 individual panels that each commemorate a life lost to AIDS and sewn together by friends and loved ones.

Adding to the AIDS Quilt in 1992. Elvert Barnes

Today our deaths have again become private acts. I sometimes wonder whether as societies we can learn something from the way death was celebrated as much as mourned in those communities in the 1980s and 1990s.

A sad indictment

Little is said in the film about survivor guilt among those who made it to the other side. Lives were also destroyed because people were unable to actually make sensible life plans. If you think you’re going to die within a few months or years, a career and pension are not what’s foremost on your mind.
The most tragic thing, to my mind, is that the advent of powerful AIDS drugs that have permitted people to live healthy lives again have basically ended AIDS activism in the west. In some places in the west, HIV infection rates are still high among gay men. But, as is all too briefly flagged in the film, millions die preventable deaths from HIV because they cannot afford access to life-preserving HIV medications in the developing world.
It is a sad indictment of Western AIDS activism that it pretty much ended as a politically powerful movement once its figureheads’ problems at home were solved. There are a few notable exceptions to this, but as a general rule, I’m afraid this is what it is. We are left today with professionalised AIDS bureaucracies that more or less go through the motions. This isn’t radical activism any longer but well-paid senior management types in upmarket office digs.
It would have been nice, in the context of the film, to hear something about the battles for survival that millions of HIV infected people in developing countries face today. South Africa’s former president Thabo Mbeki joined western HIV denialists, people who today still insist that HIV is not the cause of AIDS, with the result that more than 365,000 South Africans are estimated to have died premature deaths during his presidency because of a deliberate act of omission (namely by refusing to provide AIDS drugs through the public health care system).
No doubt, if this had happened during the apartheid years, AIDS activists would have rallied to this cause, but it didn’t cause much excitement among Western AIDS activists. HIV infected Africans struggling to survive the pandemic is a seemingly less important cause than fighting for the same cause in their own backyard.
What the US AIDS activists did was to radically change AIDS from being a death sentence to something that could be managed. For all those thrown sideways by the appearance of a such a terrible illness and who suffered the loss of loved ones, it was no mean feat. But we still need that spirit of activism and that determination to make sure others, however far away, get access to the same drugs we readily have now.