He repeated his question, “Why won’t you list the names of everyone who tests positive?” He went on, suggesting the list could be kept by a respected elder in the village who would advise others on how to avoid infection. Glory, my Tanzanian teaching partner, retranslated the question, trying even simpler English words the second time to convey what the mzee at this community meeting in a rural village in Arumeru District was asking.
But I understood his question perfectly the first time he asked it. My silence was not because I did not understand the question. My silence was a manifestation of my not understanding how we had failed to convince the most powerful people in this community of the importance of confidentiality in HIV testing.
After completing my first year in graduate school in 2004, I volunteered with a now-defunct NGO that coordinated partnerships between American university students and recent graduates of Tanzanian secondary schools to provide HIV awareness education in schools and at large community gatherings. The village meeting where this mzee asked his question was a culmination of our efforts in the area following weeks of working in the local schools teaching HIV epidemiology and the current best practices for avoiding infection.
Previous volunteers were positive about these village meetings, characterizing them as celebrations marked with community acceptance of the knowledge imparted by well-trained volunteers. Of course, it is easy today to see the warts of this NGO’s approach to HIV/AIDS intervention and the naïveté of its volunteers, myself included.
The mzee’s question that day has stayed with me. For a long time, I regarded it as a failure: we had failed to change the minds of men and women in Arumeru to match our own ideas about how to respond to AIDS. Only after some learning and thinking did I take a new lesson from his question. In asking that the HIV status of villagers be publicized, he was offering a public health solution that could prevent the spread of HIV.
Our rejection of the mzee’s proposal in Arumeru, Tanzania in 2004 is consistent with many AIDS interventions I have witnessed and studied over the last decade: interventions are often funded from afar and rarely engage influential people at the grassroots in designing the intervention.
In short, the people navigating the AIDS epidemic are objects to whom interventions are targeted. What this mzee was trying to demonstrate to me was that people navigating the AIDS epidemic also had ideas for intervention design. More simply, they had opinions on AIDS interventions.
Today the world commemorates the thirtieth World AIDS Day, an effort to raise awareness of the AIDS pandemic. Readers of this blog likely know that the African continent has shouldered much of the burden of AIDS; it is where 70 percent of the world’s HIV-infected population live. In the last twenty-five years, more than 26 million people in Africa have died of AIDS.
While there have been some important steps forward in the fight against AIDS in Africa, there have been many more failures. Take for example awareness raising – what World AIDS Day is primarily about. International NGOs funded many AIDS awareness campaigns on the continent after researchers had already learned in the late 1990s that adults living in African countries with mature epidemics were “acutely aware of the high levels of AIDS-related illness and death” and recommended anti-AIDS efforts focus on implementing control measures over awareness-raising.
Looking at failures in the fight against AIDS can help us formulate better strategies and approaches going forward. But as my experience with the mzee in 2004 should show, we must also ask and listen to the opinions and priorities of an intervention’s intended beneficiaries.
Knowing the opinions and priorities of ordinary citizens has become easier since the advent of Afrobarometer, a pan-African research network that conducts public attitude surveys in more than 35 African countries. Fifteen years ago, Afrobarometer data showed us that while southern Africans were aware of the AIDS epidemic and willing to talk about it, very few of them thought AIDS should be a priority for their governments to address.
My own research in Malawi – one of the countries hardest hit by AIDS – has been consistent with the Afrobarometer results, showing that ordinary citizens generally give lower priority to AIDS when compared to other pressing development issues. While HIV-positive Malawians ranked AIDS interventions higher on their priority list than HIV-negative Malawians, AIDS was not as pressing an issue for people living with HIV as issues like clean water and agricultural development.
When I teach about this research, my students often invoke “awareness” as the problem and education as the solution. And I both agree and disagree with them. The data are clear that the problem is not that Malawians or southern Africans more broadly are unaware of the dangers of AIDS. They don’t need a World AIDS Day or its local equivalent to “raise their awareness.” The awareness problem is in the West, where many imagine Africa as a place suffering from AIDS. If we want to use World AIDS Day to raise awareness, we should raise awareness about the many issues citizens in Africa face and their priorities for what needs attention – not just AIDS.
* This essay is an adapted excerpt from Kim Yi Dionne’s new book, Doomed Interventions: The Failure of Global Responses to AIDS in Africa, published by Cambridge University Press.