SUDAN: HIV status a closely guarded secret for most

Fadia Awad offers us sweets, a traditional Sudanese gesture of hospitality, and then asks if we are going to refuse them, as all her neighbours do.

She belongs to the Rashaida tribe, a traditionally nomadic people who migrated to eastern Sudan from the Arabian Peninsula in the nineteenth century. She and her son, Hamid, 8, live alone in a spotless, one-room hut in a desert settlement outside Kassala, in eastern Sudan.

"Three years ago this house was full of women cooking, talking and laughing," Awad tells IRIN/PlusNews. "But since I got sick, they don't come anymore."

Her husband died from an AIDS-related illness three years ago, not long after returning from military service in Saudi Arabia. She and her son are both HIV positive, but have been healthy since beginning antiretroviral (ARV) treatment two years ago.

"In this tribe, everyone knows your business," Awad says matter-of-factly. "We've been completely isolated." She points to a hut visible from her window. "My husband's relatives live nearby, but I have no relationship with them anymore."

The night before, we had attended the wedding in Kassala of an openly HIV-positive man, Alsawi Ali, to an HIV-positive woman from Khartoum. Ali, the head of a local association for people living with HIV/AIDS (PLWHA) who regularly talks about his status at awareness events, was surrounded by friends eager to congratulate him and shake his hand.

Sadly, Ali's status as a respected member of his community is still a rarity for people living with HIV in northern Sudan, while Awad's experience is closer to the norm.

"There was very little engagement on HIV until a few years ago," said Severine Leonardi, HIV/AIDS manager for the UN Children’s Fund (UNICEF) in northern Sudan. Although the government is now putting its weight behind prevention campaigns, talking openly about HIV is still difficult in the conservative northeast of the country.

Ali's services as a guest speaker were much in demand at the numerous World AIDS Day events in Kassala during December 2007. According to Musa Bungudu, the UNAIDS country coordinator, "Kassala is one of the states that's a little ahead" in terms of AIDS awareness efforts, but in rural areas, such as where Awad lives, evidence of this progress is hard to find.

Hamid's HIV infection means he has no playmates and does not attend school. "Everyone knows about his father and his story, and I'm afraid they'll abuse him," Awad explains. "He tried going to the religious school, but the other boys refused to share a classroom with him so he dropped out."

Even Awad's attempt to make an income from three goats given to her by a non-governmental organisation failed. "No one would buy the milk, so I sold them," she says.

In Port Sudan, on the country's Red Sea coast north of Kassala, six men aged between 20 and 30 died of AIDS-related illnesses in one week during December, all patients at the city's main hospital. Jhalid Sharif, who runs the local branch of the Sudanese Association for People Living with HIV, said only one of the bodies was collected by the deceased's family; the association had to arrange for the collection and burial of the other five.

Fear of such stigma and discrimination prevents many people from revealing their HIV positive status, even to close family.

Hassan Mokhtar [not his real name], 34, from Kassala, learned he was HIV positive over a year ago, but has not told anyone in his family and is careful not to be seen when he enters the clinic to pick up his antiretroviral (ARV) drugs. "I know other HIV positive people who were rejected by their families," he says. "I expect mine would do the same." 

Those involved in Sudan's anti-AIDS efforts also worry that the fear of stigma is preventing people from being tested for HIV, and even from seeking life-prolonging ARV treatment.

Although free treatment is slowly becoming available at public health facilities, the problem is getting more people to use them. "Some people will travel to another state to get treatment to avoid being recognised," Ali says.

He recalls one case where a man had been travelling 600km to Khartoum every two months to pick up ARV drugs until he ran out of money to make the journey. "He would have dropped out of treatment if I hadn't gone to the clinic [in Kassala] and got the drugs for him."

So far, the PLWHA association in Kassala only has eight HIV positive members, including Awad and Mokhtar. Ali says high levels of illiteracy, as well as stigma, prevent more PLWHA from getting involved, and some of those who find their way to the association are only willing to speak in closed workshops or at awareness events far from their homes.

The association receives some financial support from ACORD, an international humanitarian organisation, but it has no fixed budget and no vehicle. "Sometimes people from rural areas request us to do awareness activities but we can't because we lack transport," Ali says.

The association in Port Sudan also has eight members living with HIV, one of whom was seriously ill in hospital when IRIN/PlusNews visited. "He was on treatment but he stopped taking it for two months because a watermelon seller told him he had a very good treatment for HIV," Sharif tells us. "The remedy was made of honey and grass."

Lack of financial support and an office where members can meet are problematic, but stigma is the biggest barrier. According to Sharif, "There are many, many people who are in hospital [with AIDS-related illnesses] who are not involved with the association."