Positive networks fight HIV in the south

Networks of people living with HIV in southern Sudan are trying to overcome deficiencies in the limping health system and broken infrastructure by spreading information about the pandemic and reducing stigma and denial.

"We have come to rely on these networks to do much of the education around HIV," Bellario Ahoy Ngong, chairman of the South Sudan AIDS Commission (SSAC), told IRIN/PlusNews. "They have been responsible for significantly lowering levels of stigma around the epidemic in the south."

The Sudan Network of People Living with HIV (SSNeP+), an umbrella body for associations of people living with HIV in the south's 10 states, was established in 2007 to give HIV-positive people a platform and a voice, and has been involved in drafting legislation - yet to be passed - on the rights of people living with HIV.

"At the time we started there was very bad stigma and character assassination of people living with HIV. We started with small group sessions to let people know they were not living in isolation; today SSNeP+ has 11 member associations from all over the south. Slowly, as a result of our openness about HIV, stigma has stared disappearing," the chairman, Lole Laila Lole, told IRIN/PlusNews.

The SSAC's Ngong said the role of SSNeP+ member associations had extended from reducing stigma to educating the population about HIV, and identifying HIV-positive people in the community in need of assistance; they had also benefited from SSAC income-generating projects, such as honey production and goat rearing.

A growing role

"We actively encourage people who test positive for HIV to be open about their status - it is the easiest way for them to get assistance, and it further helps to reduce stigma," Ngong said. "We are trying to build the network's capacity to advocate for openness and registration of these people."

"We respect people's right to confidentiality, but we have seen that openness can make you free; many people die early because of the stress of hiding their status from their families and friends," said Lole, who was diagnosed positive in 2002 after the death of his wife and child. "Once you declare it openly, people see that HIV is a disease like any other."

Openness can make you free; many people die early because of the stress of hiding their status from their families and friends

In Yambio, capital of Western Equatoria State, more than 17,000 have already registered as members of various associations of people living with HIV; Ngong said the SSAC would build the capacity of the associations to expand their work into the rural areas.

The SSAC also intends using the associations in its drive to get more people to be tested; so far, just one percent of people have been tested for HIV.
"Once people are tested they can join the associations, which we foresee becoming even more powerful tools for advocacy and HIV programming," Ngong said.

Government must not shirk its duty

The government is also discussing the idea of training people living with HIV as health workers, and using their office facilities to set up pharmacies to dispense life-prolonging antiretroviral therapy (ART).

However, Lole was not sure that this would be the most effective way to expand treatment in the region. "ART is a complex area that needs professionals, not lay people, to handle it," he said.

"Treatment is the responsibility of the government, and while we are ready to help with education and awareness, the government must not push its duties totally on us," he commented. "We need quality referral centres, not small pharmacies attached to our offices."

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