Postponing sex and `zero grazing’ are just some of the ways in which Ugandans are coping with HIV/Aids, writes Mercedes Sayagues
Sophia Mukasa-Monico (38) is a smart, elegant, strong-willed Ugandan lawyer. As we sip a cold drink one steamy Sunday afternoon in Kampala, she tells me a story.
Seven years ago, her sister died of Aids, at age 35. Her sister’s husband was a wealthy businessman, president of the Chamber of Commerce. He had four wives and several girlfriends. Between 1991 and 1995, the man, his wives and six of their children died of Aids.
Twenty-one children survive. The family put them in a big house and shared the financial and parental responsibilities. This worked until last year, when the children were placed with family members.
Mukasa took in four – in addition to her own two children. Her Italian husband died of cancer three months after the youngest was born. “I try to treat all the children equally but it is not easy. Sometimes I am resentful,” she sighs.
Not one to linger in self-pity, she pulls herself together: “I am not unique. This is the story of Uganda.”
As director of the Aids Support Organisation (Taso), Mukasa hears similar stories every day. Taso offers testing, counselling, outpatient clinical care and homecare for infected people, and awareness courses for health staff, politicians and village workers. The Taso at Kampala’s Mulago hospital sees 100 to 120 people daily.
Since 1987, 48 000 people with HIV or Aids have sought Taso. Of these, 11 000 have died. Currently, Taso has 28 000 active clients (defined as those who visit at least twice every year).
The staff has grown from 16 to 250. Reversing the early strategy of setting up its own centres, Taso trains counsellors within existing institutions, such as health units, clubs or youth groups.
Counsellors work one-to-one and with the family, advising on good nutrition, hygiene, Aids prevention and dealing with grief.
“Whereas cancer strikes an individual, Aids hits the family group in a chain effect,” explains Mukasa. “Children know their parents and siblings may die. Sometimes children spot the symptoms before adults accept they are sick.”
Funded by Danida, USAid, the Elton John Foundation and other donor organisations, Taso’s budget for the next year is US$3,5-million – one- third more than what South Africa spent on the botched Sarafina II Aids play.
“Taso was a ground-breaking model. A lot of the earliest information on counselling needs came from it,” says Helen Jackson, director of the Harare- based Southern Africa Aids Information Dissemination Service.
Taso is one of many creative grassroots schemes Uganda developed early on. Coupled with the government’s open, pro-active policy, they helped Uganda cope with the pandemic, and possibly curb infection rates.
HIV prevalence among pregnant women, especially among young women, has declined in five sites since 1991. At clinics for sexually transmitted diseases in Kampala, Aids infection rates have declined from 44% in 1989 to 30% in 1997.
Researchers say that these figures more than likely reflect fewer new infections, although the death of infected people and lower fertility among infected women may be a contributing factor.
“There seems to be some room for optimism, but one must be cautious and not feel there is any room for complacency,” says Jackson.
“Infection rates are still very high,” warns the Uganda Ministry of Health. Ten per cent, or 1,5-million, of Uganda’s 19-million population, are infected. Half-a-million people have died of Aids since it was detected.
It began as a gradual wasting away, called “Slim” disease, along the shores of Lake Victoria in the mid- 1970s. The first diagnosis took place in 1984.
President Yoweri Museveni acknowledged the problem soon after coming into power in 1986. A national committee for Aids prevention was set up that same year. This is all the more remarkable since Uganda was emerging from 15 years of brutal civil war, its infrastructure and health services shattered.
“Museveni took a leadership role early on and that had a tremendous impact,” says Jackson.
In 1991, the government adopted a multi- sectoral approach. The strategy included intensive education campaigns, condom distribution, voluntary HIV testing, pop songs, billboards, drama groups, counselling and support services.
Even the army was dragged in by its flamboyant Major Rubaramira. HIV- positive since the late 1980s, he embarked on a public crusade for Aids prevention. A founding member of Taso, the major openly discusses condoms, safe sex and retroviral therapy.
Surveys have shown that 98% of Ugandans know how Aids is transmitted. “Still, they do not discount witchcraft,” warns Mukasa.
Population surveys by the Ministry of Health in Kampala, Jinja, Kabale, Lira and Soroti districts reveal promising signs of change in sexual behaviour. Over the past five years, many Ugandans say they have adopted safer sexual practices.
More adolescents are postponing sex. Compared to five years ago, the age of first sexual relations has risen. Less than half of boys and girls aged 15 to 19 reported sexual activity, compared to 71% in 1989. Among the same age group, the number who engage in casual sex decreased from 37% to 21% in the same years.
A good number of unmarried adults practise abstinence as their defence against infection. Smaller numbers say they have sex with non-regular partners. Among those involved in non- regular sex, 60% have only one sexual partner. In 1989, the majority reported multiple sexual partners. Among married people, more say they are faithful to their spouses.
This is in line with the messages “no sex before marriage” and “zero grazing” (only one sexual partner) promoted by sexually transmitted diseases-Aids control programmes.
More men and women of all ages report using condoms.
Among the 15 to 19 group, 36% of boys and 25% of girls report using condoms, compared to 15% and 7% respectively in 1989. The figures are similar for the 20 to 24 age group.
For the 25 to 39 age, 31% of men and 19% of women use condoms, compared to 11% and 3% in 1989. Data suggests that people are more likely to use condoms as protection with a non- regular sexual partner, but not with a spouse.
“Declining trends in HIV infection and reported sexual behaviour changes are success stories that give us good hope … but there is a need to intensify the present prevention and control strategies,” says the Uganda Aids Commission.
The next strategy targets adolescents. “The weak link so far,” says Mukasa. Uganda first focused on infected adults and groups at risk like prostitutes. Then children. Teenagers were taught Aids prevention, but in a drab way.
Taso is going for peer pressure, using what Mukasa deems “the biggest agent of change, the most effective information tool”: young seropositive people who pass the message through drama, song and dance in schools, sports clubs and villages.
Owing to civil war and Aids, Uganda has an estimated two million orphans (defined as children under 18 who have lost one or both parents).
Government policy is to discourage orphanages, considered alien to Ugandan culture, and to support community-based care.
But even the most generous communities are stretched by demand. Orphan-headed households are becoming common. Fearing inheritance disputes, clan elders may not want the children to leave the land. Or there are no adults left to take them in.
Local support systems are springing up to care for orphans. The NGO coalition Uganda Community-Based Association for Child Welfare gives loans.
Drive through Rakai and Masaka, the worst-hit districts along Lake Victoria, and the effects of the pandemic are obvious: abandoned banana groves, overgrown fields, empty, closed houses, fresh graves next to homes, coffin-making shops and funeral processions.
Along the road, the signs tell the story- Drugshop: deals in human and spiritual drugs; Asthma and Aids solutions; Dr Wamunge Aids trial clinic, honey pills, red syrup; Trust the Lord Drug Store.
At a country fair in Bugala island on Lake Victoria, Dr Dumba and Sons Research Unit displays its Aids vaccine. For 5 000 Ugandan shillings (US$4), Mrs Dumba will sell you “Alisasira 43 NN, as shown by radionia computer, to fight Aids, malaria and infuluenza [sic]. Three drops on the tongue twice a day of this medicine with homeopathic and magnetic ingredients.”
A group of young men study the vials. I ask one: “Would you try it?” “Yes,” he says. “Would you still use a condom?” One says no, two say yes. Mrs Dumba smiles sweetly and says there is no need for a condom with her vaccine.
Since 90% of Ugandans go to healers, Taso works with them through the Traditional Healers Effort Against Aids. Healers learn Aids prevention and how to treat opportunistic diseases.
Some traditional herbs work well for Aids-related ailments. For example, essential oils treat herpes zoster and skin rashes more effectively and faster than modern medicines.
One development not yet fully understood is that seropositive people are living longer and more healthily. Since 1994, Taso counsellors see that patients, instead of lying emaciated for months, live longer after diagnosis.
Not only sexual behaviour is changing. Burial rites require farming to stop for three to seven days, and the corpse is only buried on the third day after death. These practices are becoming shorter. Only the closest kin will follow the full mourning ritual.
“Otherwise, you end up not farming for a whole month because of successive deaths in the village,” says Stella Neema, from the Institute for Social Research at Makerere University, author of a study on the impact of Aids on agriculture.
Traditional self-help groups set up to weed and harvest collectively take on new tasks. Ekibina clubs buy big pots and plastic dishes to be shared at funerals. In the central areas, Munomukabi (a friend in need) organises funerals and comforts grieving relatives.
In mountainous Kabala in the south- west, and in Mbale, in the east, members of burial associations take turns in a relay system to carry sick people to health centres.
Increasingly, these groups may arbitrate inheritance disputes and organise orphan care.
Another practice slowly eroded by fear of contracting Aids is inheritance of the brother’s widow. However, it still goes on. “It must be fatalism, otherwise how can you explain it?” says Mukasa.
An Aids vaccine is the only solution, she says. Retroviral therapy is too expensive: “Even if the price was reduced from US$800 to US$100 a month, how can people here have it when they cannot afford malaria tablets?”
Information, prevention and solidarity are Uganda’s best response to the HIV/Aids pandemic.