- The challenges of achieving the Malawian government's goal of universal access to anti-AIDS treatment are nowhere more apparent than in Usisya, an isolated community on the northern shores of Lake Malawi, where treatment is not yet available.
Usisya, with approximately 17,000 residents, lies between the mountains and the lake; electricity, telecommunications and regular public transport are all lacking, and one dirt road connects the area with Mzuzu, the nearest town. No one owns a car, let alone a four-wheel drive vehicle for driving on the rough mountain road, but a ferry goes north to Nkhata Bay on a Monday and returns on a Sunday.
Charles, 38, and Alice, 30, (not their real names) a brother and sister, share two misfortunes - their HIV positive status and the remote location of their home.
The two siblings board the ferry every month to collect life-prolonging antiretroviral (ARV) medication at the hospital in Nkhata Bay, one of only two sites in the district providing treatment. The journey there and back costs them each 1,000 Malawian kwacha (US$7), plus the cost of meals and accommodation for six days in Nkhata Bay.
In a community where virtually the only livelihoods are fishing and subsistence farming, neither Charles nor Alice has an income and they usually depend on friends and family to scrape together the fare to Nkhata Bay. They both started taking the drugs in January this year but have already missed two months of treatment because they could not afford the trip.
Asked if they understand the dangers of developing drug resistance, they nod and shrug helplessly. No one has measured HIV prevalence in Usisya, but a districtwide antenatal survey in 2005 revealed a prevalence of 24 percent, significantly higher than the national rate of 14 percent estimated by UNAIDS.
HIV/AIDS awareness and education campaigns have been slow to reach Usisya and high levels of stigma towards the disease have further obscured the extent of the problem. No one in the community has gone public with their status, making the monthly trips to Nkhata Bay an even greater burden for the more than 50 individuals accessing treatment there.
"In Usisya we're like one big family, so some people know why I go," said Charles. He, his sister and 13 others belong to a local support group that meets secretly once a month.
Usisya is not the only remote community in Nkhata Bay District lacking affordable public transport. According to Victor Matayataya, chairman of the District AIDS Coordinating Committee, 20 percent of patients using the district's ARV programme do not show up for their monthly appointments.
The default rate for Usisya is even higher, said Obert Nyondo, a volunteer counsellor at the ARV clinic at Nkhata Bay Hospital. The hospital does not have sufficient staff or resources to follow up all defaulters but Nyondo, who has watched four of his brothers die of AIDS-related illnesses, travelled to Usisya recently at his own expense to track down 17 patients who had been missing appointments. He found that two of them had died and others said they could no longer afford the monthly journey.
"Starting people on ARVs is not a big problem, but adherence is tough for those having to travel long distances," said Austine Mwafulirwa, one of four clinical officers at the hospital. "We want to bring outreach for ARVs to Usisya and other clinics, but we're waiting for the District Health Officer to release funds." Matayataya said this was likely to happen some time next year.
At present the Usisya clinic is staffed by a nurse, a medical assistant and eight health surveillance assistants (HSAs) - Malawi's lowest-qualified cadre of health workers, who receive 10 weeks of training. Voluntary counselling and testing (VCT) belatedly became available in 2005, but Charles pointed out that "a lot of people don't see the point of testing when they can't afford transport to Nkhata Bay for treatment".
There is no nutritional support for HIV-positive patients who cannot afford the trip to Nkhata Bay, and the clinic's monthly allotment of 5,000 condoms is usually not enough to meet demand. Senior HSA, Marvis Njikho, coordinator of the clinic's VCT services, told PlusNews there was a need for more training and resources.
"When they [hospital staff] come from Nkhata Bay, we try to tell them what we face," he said. "We need HIV/AIDS educational materials; we need to know how to assist people who don't have money to travel to Nkhata Bay; and we need more training because sometimes when clients test positive, they ask a lot of questions and we don't know the answers."
Besides the clinic and a handful of community-based organisations that receive small grants from the National AIDS Commission, the only source of HIV/AIDS information and programmes in Usisya is a small British NGO called Temwa (locally known as Temwenani). Temwa's main focus is poverty alleviation through skills development and the promotion of more sustainable agricultural practices, but they also organise weekly screenings of videos about HIV/AIDS and coordinate a HIV/AIDS educational programme called 'Stepping Stones'.
The programme, which covers HIV/AIDS, gender roles, domestic violence and teenage pregnancy, was developed by the international NGO, ActionAid, and has been used all over the developing world, but facilitators are recruited locally and encouraged to adapt 'Stepping Stones' to local needs. Since it was launched in Usisya last November, 320 community members have participated in the 19-day workshops.
Facilitator Franders Thawi believes the programme has had an impact. "People are demanding more condoms, and family planning services and even VCT attendance has improved," he said.
The challenge is addressing boredom, possibly one of the biggest drivers of the epidemic in Usisya, especially among young people. Farming is only viable during the 6-month rainy season and fishing in dugout canoes is only safe when the lake is calm. There are a number of churches, but no youth clubs or sports facilities. Small groups of young men often while away the hot afternoons drinking local alcohol made from sugar cane.
"The problem is, we're telling people not to engage in risk-taking behaviours, but not providing any alternatives for them," said Thawi.
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