A group of HIV positive Swazis is considering taking the government to court for an alleged erratic supply of antiretrovirals (ARVs), but officials insist that the lack of drugs is a matter of perception, rather than reality.
"Government should prepare itself for a lawsuit," said Hannie Dlamini, secretary of a five-man committee tasked by the group to challenge government on the country's ARV distribution. The first Swazi to publicly declare his HIV status, Dlamini is the founder of the Swaziland AIDS Support Organisation (SASO), a NGO partly funded by the UN Global Fund on HIV/AIDS, Malaria and Tuberculosis.
The yet-to-be-named organisation of ARV users, formed at the weekend, has given the government until 24 December to offer a reliable drug distribution programme. If it failed to do so, the group would press ahead with a court action, Dlamini told other HIV positive Swazis gathered at the Manzini Public Library, 35 km east of the capital, Mbabane.
Last month, PlusNews reported that Swaziland was facing a serious breakdown in the supply of ARVs, and some hospitals had admitted that stocks ran out weeks ago.
Government health officials have denied the claims and asserted that a personnel shortage in some hospitals might have affected the distribution of ARVs.
"The rollout of ARVs has worked remarkably well. The World Health Organisation (WHO) projected 13,000 people on ARVs this year; by September, we had 14,500 people on the programme, so if there were shortages, it is a measure of our success," Dr Derek von Wissell, director of the National Emergency Council on HIV/AIDS (NERCHA) told PlusNews.
With exception of the prevention of mother-to-child transmission programme, NERCHA is responsible for ARV distribution in hospitals across the country. The agency also funds anti-AIDS initiatives with grants from the government, private donors and the Global Fund.
NERCHA's ARV distribution has been affected by a Global Fund decision to suspend funding about four months ago. ARV users blame the suspension on the government's failure to use a computerised system to track HIV patients, and to meet other Global Fund requirements.
"When the Global Fund issued its first grant to Swaziland, after 18 months an assessment was made. They made further funding conditional, and said no monies could be used to procure ARVs until patient and drug management systems are in place," Von Wissell admitted.
The Fund had financed the computer system that was to be a national database of ARV users, but government personnel were reluctant to use the new computers, preferring to maintain and store data on cards, which led to loss of information and slowed down drug distribution, the group of ARV users claimed.
"The paper system was inadequate," acknowledged Von Wissell. "Government has adopted a new computer system, using software recommended by WHO. Data is being transferred now from the manual system." He predicted that the Global Fund conditions for funding would be met by the end of this month.
Meanwhile, government has purchased the necessary ARVs, Von Wissell said. All 17 ARV distribution points in Swaziland now had adequate supplies of the drugs and these points would be linked to the computerised data system.
People with HIV/AIDS, as in any other viral or bacterial infection, have to take their medicine regularly or they will develop resistance to it. In the case of HIV infection, resistance is far more serious as there are few alternative drugs available.
Sylvia Khuzwayo, part of the group advocating a lawsuit against government, said, "Legal action needs to be taken against government because I signed an agreement [at Mbabane government hospital] that I shall be provided with the drugs. Government is also fully aware that a patient should not miss even a single day on the drugs."
SASO estimates that over 10,000 people are currently on some kind of ARV regimen. More than 40 percent of the country's sexually active adult population is HIV positive - about 200,000 people or one-fifth of the Swazi population, according to official statistics.
AIDS treatment activists fear the inconsistent supply of ARV will also have a negative impact on HIV disclosure and testing. The government's assurance that people would immediately be put on life-extending ARV drug treatment has been key to overcoming Swazis' unwillingness to take blood tests to determine their HIV status.
"Part of the reluctance people had toward learning their HIV status was ... that AIDS is incurable, and they just did not want to know they were going to die ... ARVs changed things - the drugs offer hope that you can live fairly normally for a decade or even a normal lifespan, because ARVs are improving," said Janice Simelane, an AIDS counselor in Manzini, Swaziland's commercial hub.
Last month, Hlatikhulu Government Hospital, the principal medical facility in the southern Shiselweni region, ran out of ARVs. The supply was replenished after three weeks, according to media reports, but a health ministry spokeswoman acknowledged the problem only after it had been addressed.
Several people living with HIV/AIDS recounted stories of being turned away at government pharmacies because of a lack of ARVs. "There is also a shortage of personnel to distribute the drugs - patients have to wait all day," Dlamini said.
"We know we are a poor developing country, but there are some things you just can't be casual about. ARVs can save the Swazi nation, because so many of us are getting HIV. It cannot be business as usual - 'mistakes will happen, come back next month'. Not with these drugs - it is too serious," said Star Nkambule, an ARV user.
Von Wissell acknowledged the challenges of treating so many new HIV patients, but asserted, "We are saving more people than we expected to save."