Author: David Patient, September 26 2013       All too often in community based programs, those driving them make fatal calls, with the best intentions, without thinking it through and looking at the long term implications of their interventions.

Seldom do these same people arrive at any given site without some kind of pre-hypothesis of what is wrong, broken or needs to be fixed. More often than not, programs are designed and imposed and little input is asked of those on the receiving end. And seldom do these interventions 'start where people are' and not where those delivering think they should be. So many assumptions are made and drive the direction of the intervention and these assumptions are usually way off the mark. How can we teach a person about transmission when their understanding of their own body is non-existent? How can we teach reproductive health when the vast majority of the women we work with don’t even know why they menstruate? How can we encourage men to get circumcised when we don’t take the time to explain why it is important and the mechanisms of Langerhans cell transmission? We have assumed a basic understanding that does not exist and proceeded to educate people around complex issues when the basics aren’t even in place. We are doing them a disservice under the guise of empowering and educating them. We have failed them.

In recent years, in HIV prevention, treatment and care, the key focus has been on Prevention with Positives. A great deal of time, effort and resource has backed this key focus population and that’s where the wheels have fallen off. By identifying the positive population and getting them into care and support, stigma has been perpetuated, be it institutional or communal. By setting up support structures that only address the positive population, we have neglected those affected (family and friends); the unexposed or yet to be exposed members of the community. By setting up HIV Positive-only support groups we have isolated this population from the rest of their community. We focus so heavily on the needs of the positive community that we have failed those who are "HIV negative", "HIV I don’t know my status", and the "HIV I don’t want to know my status". We have dropped the ball and lost many opportunities to educate the entire community, bringing them with us, which would make our work with the positive population that much easier and less secretive. 

A few years ago, we rolled out a process in the Free State [a province of South Africa] called Post Test Clubs and the only requirement to join these capacity building clubs was that you could prove you have been recently tested and were aware of your HIV status. No disclosure was required. The clubs consisted of people who knew their status, be it positive or negative. Once a member of the club, the member would attended a series of lessons that ranged from "knowing your body" to the basics of germ theory and transmission, positive living, home gardens, doing a home budget, working with money, how to communicate, substance use, and so on. Each of the themes had been identified and prioritized by the members themselves so they were invested from the word go. Everybody learned the same information regardless as to their status. And the agreement was that each member would teach at least five other people, outside the clubs, what they had learned, using the Pay It Forward principle. We started out with 250 people we had trained and within 8 months, we had over 8000 members in the Free State and parts of the Eastern Cape. Initially, only one or two people disclosed their status to their fellow members, but as time went on, and people become more educated around HIV, their fears diminished and more and more members started to disclose as they felt safe within their group to take this risk of disclosing. The response from the rest of the groups was a loud and resounding "SO WHAT!"....it didn’t matter as people were no longer ignorant as to transmission and what it meant to live with HIV. Had this been done in the "prevention with positives" framework, only those living with HIV would benefit from the education and life skills lessons that were taught.

We were then tasked by our funders to do a "Prevention with Positives" only intervention and exclude the rest of the community. We protested, predicting failure and put forward the Post Test Club model [described above], but it was shot down as this was not the agenda of the fund managers. They only wanted Prevention with Positives. So mobile test sites were set up, nurses and community health care workers hired and wellness days were rolled out in many of the country's so-called "hot spots" - grossly under-resourced areas. Each person was encouraged to come to a wellness day event where they would be screened for HIV, TB, STIs [sexually transmitted infections], hypertension, diabetes and early cervical cancer screening (gender appropriate). Each person got to spend almost an hour with a health care professional and once they were tested for HIV and the test was positive, they were introduced to the Wellness club facilitator and were enrolled into a support group for positive people. Those testing negative were patted on the back and sent away with a false sense of security. The Wellness clubs were simply a disguise for a HIV positive support group. Initially the uptake was mind blowing and we were recruiting up to 150+ people a month for the clubs. And the clubs were booming with activities as we spent 17 weeks building their understanding, educating and mentoring the club members. After the initial four month surge of new members, the numbers took a dramatic nose dive and we were lucky if we could enroll 50 people a month, across 17 sites, with a gross population into the millions. So we started asking questions as to the lower uptake. Turns out word was spreading that the Wellness Clubs were simply a place for positive people and this was the beginning of the end of the Wellness Clubs. Word was out on the street in the community and people stopped coming or finding excuses not to attend. If you attended a Wellness club, you were by association, infected. Stigma perpetuated…that whole ‘road to hell’ thing!!! And all because some academic, with no on the-ground, real life hands on experience, who controlled the purse strings, also controlled the agenda and knew what was best. So almost a million USD later, and years of intense work, and the Wellness Clubs are being shut down, 30 plus staff let go and the community is none the wiser nor more educated than before the intervention. What was the point? Had we taken the whole community with us, educating and empowering them as a whole, based on our Free State and Eastern Cape experience, the clubs would be thriving, not shutting down. Had we taken the time to connect with the community on issues that were of concern to them, we would have gained more trust and as a result, increased participation in the education of the community, not just around HIV but other diseases and illnesses and mainstreamed HIV, lessening stigma to a point where it would become non-existent.

When will those who control the budgets and the agendas actually listen to the people working on the coal face? We may just have insights and methodology based on extensive experience, which could prove invaluable to your programs….

David Patient is one of the longest documented survivors of HIV today having been diagnosed in March 1983 and given six months to live. He has worked in community development (health) for the past 26 years. He can be reached at davidrosspatient.empow@gmail.com  or via his website.

Image credit: Ikhwezi Wellness Centre