The InterDependent

The fishing villages of Bugala—the largest island in a cluster along Uganda’s side of Lake Victoria—offer the chance to earn quick money if you’re willing to take a few risks. The men brave cold nights and towering thunderstorms in pursuit of the diminishing schools of Nile perch and mukene fish in Africa’s largest freshwater body. Commercial sex workers take small rooms for the weekend in barracks-style buildings and wait for the fishermen to return to shore, hoping they’ll spend their newfound wealth on quick encounters.

But it’s beyond the immediate difficulties of island life where the greatest peril is found: Bugala is at the center of Uganda’s modern HIV epidemic. The isolation of the island, the mobility of the fishermen, and the dangers inherent in their jobs have formed the perfect storm of conditions for the disease to spread. Today, the HIV prevalence rate in fishing communities like these hovers at a devastating 22 percent—more than three times the national average.

The numbers are striking, but what’s even more alarming is the contrast. In the 29 years since AIDS was first discovered in Uganda—in a fishing village—the mainland has achieved international acclaim for its homegrown interventions, which resulted in a stunning drop in prevalence, from 15 percent in 1992 to the 6 percent currently. Much of that change was attributed to the country’s indefatigable campaign for behavior change, encouraging the ABCs: Abstinence, Be faithful, and use a Condom. But on Bugala Island, the government and public health workers still face the same problem that they did nearly 30 years ago: Getting knowledge to translate into actual behavior change. Men who work in these communities know if they pay a bit more, the sex workers won’t demand a condom.

Like any epidemic, what happens in Bugala spreads. Many fishermen leave their families behind, but when they return for holidays, the infected carry the virus back with them. The economic consequences of such a cycle are starting to become evident. In its most recent estimates, Uganda’s Ministry of Agriculture, Animal Industry and Fisheries predicted that over a four-year period the country lost $28.5 billion as a result of HIV in the fishing communities. The hauls that the fishermen bring in represent 20 percent of the country’s exports. But as more fishermen fall sick and die, the country is losing skill and manpower.

The situation in Uganda’s fishing communities demands global attention, because the challenges within these villages are mirrored across the world. As the world celebrates incredible progress combating HIV on UN World AIDS Day, public health officials still face steep challenges in reaching the most marginalized communities where the disease continues to flourish. HIV rates are higher than average among the transient miners of Southern Africa, the migrant communities of India where people travel the region looking for work, and the soldiers trekking to far-flung missions worldwide. Figuring out how to reach these persistent pockets of the epidemic may well be the next battle in fighting HIV/AIDS.

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Seven years ago, when Isaac Mudaka’s family ran out of money to pay his school fees, he dropped out and went to work as a fisherman. The 21-year-old has been hopping around Lake Victoria’s fishing villages ever since. On the cloudless Saturday afternoon I met him, he said he hoped to make enough off of that night’s catch to afford breakfast when he returned the next morning.

Mudaka considers himself educated about HIV prevention. When he was still in school, a worker from a local NGO lectured his class on the same AIDS prevention message that has been drilled into hundreds of thousands of Ugandan schoolchildren: follow the ABCs.

But Mudaka doesn’t always follow that advice. “When I feel a lady may be [HIV] positive, I use a condom,” he told me frankly. “When that feeling does not come, I ‘go live’”—the local slang for having sex without a condom.

Mudaka is not an exception; when health workers from the regional Lake Victory Basin Commission (LVBC) surveyed the communities in Bugala this year, they stumbled across an alarming paradox: nearly everyone knew how to prevent HIV transmission. But they weren’t acting on their own knowledge.

A decade ago, Uganda set out to change people like Mudaka’s minds about HIV. And more than most countries, the government committed its all to reducing the spread of the virus, especially among young people. President Yoweri Museveni set the tone early with his message that combating AIDS was a patriotic responsibility. That grew into a multi-sectoral response—religious leaders, politicians, NGO partners and teachers—organized under the auspices of the newly formed Uganda AIDS Commission. Messages about delaying sexual introduction and limiting partners were conveyed through radio programs, school lessons and—probably most importantly—through face-to-face conversations with community leaders, who could untangle the intersection of cultural values and HIV. The interventions helped ease the stigma around AIDS, or “Slim,” as it was called, and promoted the widespread behavior change that prefaced the drop in the national prevalence rate.

For a variety of reasons, however, this general strategy was never successfully implemented in Uganda’s fishing communities. Dr. David Kihumuro Apuuli, the long-time director general of the UAC, argues that the communities’ transience means they take warnings less seriously. “The fishermen’s attitude about life and things like HIV are different from yours: [they think,] ‘I go out on this small canoe in this lake. When I come back with my catch, I enjoy my morning. I don’t know when I go back, if I’ll come back again.’ That’s their perspective about life. Messages to them have to be really different,” he said.

Uganda’s traditional approach to combating HIV also rests on community leadership—something hard to cultivate in transient populations, says Robert Mutakubwa, the project coordinator for the Ssese Islands African AIDS Project (SIAAP). His project has a hard time recruiting people to carry their messages to the community: “Our people, our community members, I wish they would actually get involved in HIV testing and counseling,” he said. “They are just coming and going.”

And alternative approaches simply haven’t materialized. Some see government neglect at the root of the community indifference: “The government and the civil society have done little on bringing interventions on behavior change in fishing communities,” Mutakubwa explains.

When the FAO did research in the islands nearly a decade ago, for example, the authors of the eventual report had a hard time masking their exasperation. They catalogued the government’s “near neglect” in leading a response and also reported, “[h]ealth and education services are minimal”—specifically services that are easily accessible to the community.

Without that base, it is difficult to layer on more complicated, long-term therapies. Since the FAO report’s release, government-run facilities have started offering anti-retroviral therapy and counseling, but only from clinics housed in a few scattered health centers. That isn’t good enough, Mutakubwa said, for a community that cannot afford the time or expense of traveling to the clinics.

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In the absence of more government resources, a handful of community-based and non-governmental organizations have sprung up and are now trying to fill the gap. One of the most successful and far-reaching of the initiatives, the partly UN-funded Kalangala Home-Based Voluntary Counseling and Testing Program (KHBVCT), decided to revisit the approach the government had used in the early days of HIV outreach: If communities didn’t seek out testing and care, the services would have to go directly to them.

“At first getting to clients [to take advantage of health services] wasn’t easy,” said Livingstone Musoke, KHBVCT’s basic care officer. “Not until [we] went home-to-home and boat-to-boat… That brought up so many clients.”

Within the fishing villages, women—especially wives—tended to be more receptive to sensitization, says Mary Nampomwa a health worker who was recruited by KHBVCT three years ago and now helps find and train community advocates. Speaking up about HIV is a way for them to take control of fears that their husbands will sleep with commercial sex workers and then bring the virus home.

The knowledge is empowering—not least for the stigmas it helps lift. With most new clients, Nampomwa starts at the beginning, explaining that AIDS is not the result of a curse. The most important message she carries, Nampomwa said, is that people need to care more—about their own heath, about their friends and about their community. She gives clients information about where to get tested and how to follow a treatment regimen. She walks people through this process many times a week, sometimes in large groups, sometimes one-on-one.

“You have to talk face-to-face,” she said. “Tell people what is taking place in this country.” That, she said, is how you start to build a sustainable community response.

In characterizing KHBVCT’s success, Musoke has to rely on anecdotes in the absence of reliable statistics. He estimated that through his organization’s interventions, coupled with those of other community-based organizations and the government, about half of the people on Bugala Island had been tested for HIV. If he is right, that would be a big change from six years ago, when the Ministry of Agriculture found that only those residents with easy access to the mainland had the opportunity to get tested.

Still, the biggest change Musoke says he has seen is in the community’s way of approaching HIV/AIDS. When people see a neighbor fall sick, they call KHBVCT to request voluntary counseling and testing services and to ask about treatment options.

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Earlier this month, U.S. Secretary of State Hillary Clinton made creating an HIV-free generation official U.S. policy. Countries around the world, including Uganda, latched onto the statement and pledged their own commitment. But it’s not going to happen without a renewed focus on the world’s mobile communities, according to Moses Bungudu, the UNAIDS country coordinator for Uganda.

“The fishing communities are part of the entire community of Uganda,” he said. Fishermen “have other relationships outside that fishing community. So if they are not taken care of and if they do not behave the way they should be behaving… how do you better control the disease in terms of transmission?”

The same question could be asked of all migrant communities. And the answer, according to Bungudu, is several-fold. Countries will have to work together to build cross-border initiatives, targeting mobile communities as they travel. LVBC—a collaboration between Uganda, Tanzania and Kenya—is already pushing for this kind of approach to the region’s fishing communities. But getting it to scale will be dependent on more funding.

Equally important, health workers will have to build relationships between these mobile groups and the local communities they live among. Groups like migrant workers and long-distance truck drivers do not “live in the air,” Bungudu explains. They interact with local populations—even if for a short time—which can spike HIV transmission. Continuous messaging to long-term residents about the risks of casual, unprotected sex and better access to HIV prevention methods, like condoms and male circumcision, could help keep prevalence down both in stable communities and among the migrant groups.

And health services are another challenge; as transient groups move, the services they receive vary and often disappear altogether. Maintaining ART treatment, or even consistently using condoms, can be difficult—a fact that can render all of the education and personal outreach in the world meaningless.

At least in Uganda, this is not news; international NGOs and local groups have been pushing to introduce these kinds of services for years—for communities frequented by truck drivers, near camps for internally displaced people, and for fishing villages.

But the challenges are great; in times of global austerity and shrinking aid budgets, sometimes the money just is not there. Says Bungudu, “We need to be comprehensive in the response. If you tell me we need to prioritize, yes. Even if you do all kinds of prioritization, [these groups] cannot be left behind. No matter how you prioritize.”