How appropriate: a Good Friday cross-post. I have been posting occasionally to Bad Blood, a blog I created to talk about HIV stigma and campaign strategy. Yesterday I wrote a post gently criticising the announcement of a new NIAID program called TLC-Plus intended to link newly-diagnosed PLHIV into medical care and treatment earlier. Rather than just repost the original entry here, I thought I would contribute some exclusive Trevorade-only content -- about stigma. The NIAID director said something particularly concerning:

"Unfortunately, many people don't make it to their follow-up medical visits for a variety of reasons. Yet these individuals can continue to spread the virus in their communities until we entice them to step through the door, whether it's giving them a pat on the back or offering financial incentives."

NIAID is the program at the National Institutes of Health (NIH) that runs America's HIV research program. Just to be clear, I don't have any particular grudge against NIAID. If I lived and worked in the States, I might. But they auspice the global HIV Prevention Trials Network (HPTN), which as a campaign strategy geek I just adore.

My favourite trial is HPTN #043 Project Accept, which matched 24 pairs of communities in Tanzania, Thailand and Zimbabwe on all sorts of criteria like population density, access to transport, and existing VCT services. In one half of each community pair, they undertook a well-theorised stigma reduction campaign, established peer support networks and provided mobile outreach VCT. In the control community (the other half) they just observed uptake of the pre-existing VCT services and monitored for crossover influence or uptake from the intervention community.

It was a three year, well-funded randomised controlled trial of a community-level, stigma-reducing prevention initiative. Over the past three years I've done a lot of work on HIV stigma and in all the literature that's practically unheard-of. The results were astounding. Uptake of HIV testing was 4x (400%) higher in the anti-stigma communities in Thailand and Tanzania, and 13x higher in Zimbabwe. Here's the takehome point: unless you address stigma, people would rather die, in privacy, untreated, of "cancer", than expose themselves and their families to the shame of a positive diagnosis.

On standard models of health psychology, taking treatment to survive a deadly illness is the most rational thing you could possibly do, which shows how little those models capture of the rationalities people actually use in their everyday lives.

That's why I was so concerned to read the NIAID Director, Carl Dieffenbach PhD, talking about how "these individuals can continue to spread the virus in their communities". I often use Link & Phelan's influential five-component definition of stigma (Ann Rev Sociology, 2001) to explain how different aspects of a public health intervention can unintentionally contribute to the stigmatisation of PLHIV, and I'd like to do that here. (Not quite in their original numerical order.)

• The third and most important component is "us and them thinking", and Dieffenbach's use of these individuals really gives the game away there.

• The first component is labelling, which is an explicit part of the TLC-Plus program under "Enhanced Testing" to identify who in a community is HIV-positive.

• The second is stereotyping, which can be seen in Dieffenbach's assertion that PLHIV "spread the virus in their communities", where the word "spread" implies (perhaps carelessly) those PLHIV intentionally cause onward transmission. (They might instead assume that since nobody cared about their own infection, nobody will care about further new infections -- a possibility I analyse in my Bad Blood post under the rubric of the social contract.)

• The fifth component the presence of social power. Social power is obvious -- there's free medical treatment on offer to poor people.

• Finally, the fourth component is status loss and discrimination. While I think the stereotyping of PLHIV as "spreaders" definitely produces status loss, I'd like to wait and see what actual services the program will provide before saying there's discrimination. If this program ends up providing free or affordable medical care including anti-retroviral therapy for people who otherwise couldn't afford them, then I would be singing its praises regardless of my concerns about the stigmatising language.

But the issue of stigma highlights one big problem with the TLC-Plus methodology, which I discuss in greater depth on the Bad Blood post. In Project Accept, increased uptake of VCT occurred in the context of widespread community diffusion of anti-stigma messages and sentiment. It was a community-level initiative with individual-level outcomes. TLC-Plus remains stubbornly focused on individual psychology and behaviour.

Yes, their project "partners" (which is a nicer way of saying "contractors") are community organisations, but that doesn't automatically make it a community-level intervention. Many of those orgs are community in name only. Part of the danger of working closely with public health departments is that after a while, you learn from the funding process to think and speak in public health language. I feel that the rational individual behavioural focus of that language makes it impossible to conceptualise community-based, culture-level interventions that can engage with social processes like stigma and advocate politically against upstream factors like lack of access to healthcare.

In my post on Bad Blood, I suggest the solutions are (1) social public health, (2) cultures of care, and at the very least, (3) behavioural economics (based on bounded rationality) as a more realistic guide to how people think in reality. I don't know whether the TLC-Plus program includes community consultation, but maybe it's not too late to communicate with its planning body and express a desire for them to get a clue.