Come to Zanzibar, the archipelago off the coast of Tanzania that is both tourist destination and home to about 1 million people, and you’ll hear about success. The place has nearly eradicated malaria — more than once — and controlled HIV to the point that fewer than 1 percent of the people on the island live with the virus — a contrast to the Tanzanian mainland where prevalence remains over 5 percent.
But sit down with a group of leaders from local organizations and you’ll hear about a response that continues to leave the most vulnerable members of the population struggling for services and information, surrounded by myths and stigma. In Zanzibar, the difference in how HIV has affected those whose circumstances put them most at risk and the larger population is stark.
Among people who inject drugs, HIV prevalence is more than 16 percent. More than 10 percent of women and girls involved in sex work live with HIV, and among men who have sex with men HIV prevalence is estimated to be more than 12 percent. While all of this makes the epidemic on Zanzibar resemble that of the U.S., a vast difference in resources makes makes a bad situation worse.
“Where are the children?” This is the question a man from an organization of people living with HIV asks at the meeting of ZANGOC — the Zanzibar NGO Cluster that is an umbrella group for those locally responding to HIV — that we attended Friday. His theory is that in an epidemic where HIV is associated with “key populations,” parents and guardians don’t disclose their children’s HIV infections — or get them treatment — because “They believe they will be seen as one of those groups.”
We, staff from the Center for Global Health Policy and five Congressional staffers, had already that day heard from a teenage girl whose parents both died of HIV, who had been tested after they were diagnosed, but who wasn’t told of her own infection until she became ill. We had also seen the challenges to tracking and monitoring outcomes of people who test positive for HIV in a place where “data collection” means overflowing file cabinets. It is a place, where without an active effort to overcome myths and prejudices, stigma is more roadblock than hurdle.
Participants at the meeting agreed that ZANGOC, which has a seat on the Country Coordinating Mechanism that works with grants from the Global Fund to Fight AIDS, Tuberculosis and Malaria, has a “fantastic” relationship with the government. But they also agree that a government leader is unlikely ever to admit to having HIV at the current level of stigma surrounding the virus. And while religion could play a uniting role here — 99 percent of the population is Muslim — a participant told us sadly: “To be honest there still are religious leaders who look at HIV as a wage of sin.”
Another tells about a local social enterprise organization that invites local women to learn tailoring and other salable skills, but explicitly disinvited people with HIV.
At the end of the meeting members struggled with the idea that stigma surrounding HIV on this successful island is bigger than the means to address it. “We have a good success story,” one said. “But we need to address it. Otherwise our one percent will be increased.”