Treatment as prevention: sustainability not stigma

Treatment as Prevention is the idea of treating PLHIV early and en masse, based on the slowly emerging consensus among medical researchers that HIV treatment reduces infectiousness. That consensus is an interesting story in its own right, since there’s not yet any new evidence to support it.

Based on a wildly unrealistic mathematical model — set in South Africa of all places — public health practitioners have been planning experimental trials of the TAP concept, and a recent post on Peripheries blog takes aim against stigma, cited as a major objection against treatment as prevention.

Intriguingly, the post states a couple of times that it’s not about stigma. Over the past three years I’ve been doing a fair bit of training and writing about how we conceptualise stigma in HIV prevention work, so I contacted the author to find out what he thought it really was about.

Imagine that you are diagnosed with a disease for which there is a treatment that can extend your life, keep you in good health, and protect others against getting the same disease. Your doctor tells you about this treatment and about its benefits (and its inconveniences, as with any treatment). Question: will you publicly question if yes or not you will take this treatment? Will you advocate for the right of people not to take this treatment?

Now, the disease I had in mind was not HIV. In fact many diseases fit the description above — TB, polio, malaria and even cancer. On the contrary wouldn’t you scream if you were NOT offered treatment? Think about all those infected with TB and want treatment and don’t have it. Think about all those in Africa affected with HIV and are fighting to get treatment. But here we are saying that people infected with a virus that will kill them and potentially kill others should not be “imposed” (upon with) treatment.

Why are there so many questions asked when the disease is HIV? That is stigma. The public health response to HIV has been absolutely amazing in that it has thrown away all known and working principles of dealing with a pandemic. Think about Polio and the massive vaccination campaign that led to the eradication of the disease, or closer to home, just think about the jab you get to protect you and your family against measles, mumps and rubella. Is anybody questioning these? (…)

Where does the idea that HIV is somehow a different epidemic come from? (e-mail communication, 16 April 2010; edited for typos)

I actually kind of agree that the major objections to TAP are not really about stigma. Stigma is just the all-purpose word that PH people use whenever they really mean “social”. In the AFAO article I called it the ‘remainder’, or what’s left over at the end of the equations — in other words, everything that doesn’t fit into the model. I find that frustrating because I like clarity and I want something I can operationalise in an educational intervention and that usage fails both tests!

The other thing that often happens in PH invocations of stigma is that it gets sidelined, ie treated as an unavoidable side effect of something that we really want to do (so no point complaining about it). We really want to do HIV prevention (so don’t complain if a few poz men have their feelings hurt by this new campaign). We really want to give people treatments (so don’t complain if a few people crazy enough to refuse treatment find themselves stigmatised).

As I’ve said in my post about TLC+, most people would be thrilled if it meant they could afford to take ART; they won’t be complaining about stigma. There’s absolutely no sign of any new money to pay to put new people on ART, so TLC+ is what you do when you want TAP without actually having to pay for it. But I guess that’s just America for you, and if it adds strength to the treatments roll-out there and in the developing world, that’s what I really care about.

The real question I have about TAP is about sustainability. Most people encounter ethics in a clinical or academic setting, where consent is mainly about protecting the institution from a law suit. In the real world, consent is about something really different. Imagine I’m a drug counsellor and I put the “hard sell” on a client to enter a residential drug rehabilitation program. They might agree reluctantly but not genuinely consent, and that strongly predicts them dropping out of the program — because they never really made its objectives their own. So they go back to using whatever and hopefully don’t overdose and have a few more chances to get free of drugs in future.

BUT if you do the same thing to someone living with HIV, “dropping out”
means developing resistance to first and maybe second line treatments as well. Then you’ve got someone who didn’t see starting treatment as their own decision in the first place, with a negative emotional history of treatment, potentially in a setting where third line treatment isn’t available or affordable.

So when Jim says we would never start someone on treatment before it was clinically necessary and they felt ready — I believe him; I don’t know treating doctors who would. But that’s where stigma DOES kick in, because it puts pressure on patients that doctors can’t see or control. That was the concern Edwin J Bernard mentioned in our discussion on the book of Face: treatment as prevention will dichotomise “good” PLHIV who take their pills as opposed to the “bad” PLHIV who don’t (and are assumed to put everyone else at risk).

So we’re not just being stigma sissies complaining about public health, or anti-vaxxers, or HIV exceptionalists. We’re onboard with the push to
expand treatment access. We’re raising social and psychological issues of direct, operational relevance to the sustainability of treatment as prevention. We’d just like to do treatment as treatment. And if your funding and ethics committees are giving you a hard time about stigma, let me know and I can send you some literature.