Of HIV and hope

Print edition : May 13, 2000

Adopting a policy of openness and transparency, Uganda fights a determined battle against the HIV/AIDS pandemic.


HUMAN immunodeficiency virus infection and Acquired Immune Deficiency Syndrome has now become the number one killer in Africa, going well beyond all predictions about its severity. According to a UNAIDS (a joint group of United Nations agencies formed fo r HIV/AIDS prevention and control) estimate, it has affected nearly a quarter of all Africans. In the worst-hit countries, it is wiping out gains achieved after decades of development work and poses the greatest single socio economic challenge to Africa.

But quite a few African countries have come out with a feisty response to this epidemic. Uganda is one of these countries where the political, religious and community leadership have come together on a single platform to combat this problem which is thre atening the very survival of the continent.

Children orphaned by AIDS, at the Kamwokya Caring Community in Kampala.-RASHEEDA BHAGAT

The HIV/AIDS images from Uganda, the small east African country which has made international organisations such as the UNAIDS sit up and take notice of its response to the AIDS epidemic, come packed visually powerful. The 10-year-old boy at the informal school for AIDS orphans run by the community based non-governmental organisation (NGO) - the Kamwokya Caring Community - with his head resting on his arm, his wide, dark eyes holding a tale of both despair and hope; John, the 13-year-old head of a househ old in Rakai district, posing for photographs with a confident smile; the musical band of HIV-positive people at another NGO called TASO; the little group of women prisoners at the Luzina prison, singing, dancing and even smiling at you through moist eye s, as they tell the horrendous tale of what an HIV-infected person has to go through.

Uganda's response to HIV, which reached the country through a fishing village way back in 1982 and spread like wildfire to eliminate 1.8 million people (UNAIDS estimate; the Uganda AIDS Commission put the figure at 50,000), has been amazing.

"There is nobody in this country who has not lost a brother, a sister, a relative or a close friend to AIDS. I myself have lost three of my close relatives to AIDS," said Dr. David Apuuli, Director-General of the Uganda AIDS Commission.

His colleagues give the list of prominent politicians and military leaders who are HIV-positive. What about confidentiality and respect for privacy, the two things dinned into your head by people working in this area in India? "Oh no, not in Uganda. From the very beginning our President, Yoweri Museveni, decided that if we are to tackle this big challenge, we'll have to adopt a policy of transparency and openness. While the heads of government in many of our neighbouring African countries decided to kee p quiet and stigmatise AIDS, the hallmark of our policy has been openness," Dr. Apuuli told a visiting Indian team (The Indian delegation comprised two Health Ministers - Dr. P. Aruna from Andhra Pradesh and Dr. Donkupar Roy from Meghalaya - and bureaucr ats and officials from State-level societies for HIV/AIDS prevention and control. The study tour on HIV/AIDS was organised by UNAIDS to expose policy-makers from the health sector in India to Uganda's response and policy approach towards the AIDS epidemi c.)

So while the rest of the world was just waking up to HIV in 1987, Uganda had already in place a high-power AIDS-control committee, chaired by the President himself. This was the precursor to the AIDS Commission, which was set up in 1992. The AIDS Commiss ion is a supra-sectoral body with members from a plethora of Ministries such as health, finance, gender, local administration, land use, agriculture and water resources.

The statistics on HIV/AIDS in Uganda are staggering. It is estimated that over two million Ugandans have been infected with HIV and about 1.9 million children have lost one parent or both parents. There are families in Uganda with only grandchildren and grandparents as the scourge has wiped away an entire generation.

"You can imagine what has happened to this society. It has been robbed of some of its most educated and productive people - the bread-earners of families. You know what happens in a family where a father dies and the mother is sick. The children get out of school and onto the streets," says Dr. Apuuli.

President Museveni's decision not to sweep the epidemic under the carpet and boldly declare that without tackling the epidemic the country could not address poverty eradication, won the attention of the world. With a per capita income of just about $320 , Uganda is one of the Heavily Indebted Poor Countries (HIPC).

Aid of various kinds to tackle the epidemic has been pouring into the country. Uganda has been a darling of donor agencies after having totally given in to World Bank and International Monetary Fund conditionalities of opening up its markets and bidding farewell to subsidies. Apart from loan waivers on a massive scale, Uganda has attracted financial resources, technical skills and commitment from international NGOs, who have joined local NGOs in combating the challenges posed by HIV/AIDS.

Messages on the use of condoms are beamed out from every conceivable forum - right from the presidential platform to the pulpit in both Catholic and Protestant churches and through the pronouncements of Imams. It was certainly not by accident that Presid ent Museveni decided to have two Bishops as the first and second chairmen of the AIDS Commission.

At the Islamic Medical Association of Uganda (IMAU), its national AIDS coordinator, Rasheed Mumyagwa, says proudly: "IMAU has declared a jehad against AIDS. From its inception in 1988, we've been educating the community on prevention of HIV and it s modes of transmission." He admits that in the beginning the Imams were reluctant to endorse the message about the use of condoms, but came to terms with it as they discovered that the pandemic was devastating the community. Although the Imams' sermons are focussed on the dangers of promiscuity, the message on the use of condoms slips through. Almost 80 per cent of the spread of the virus in Uganda is through the heterosexual route and about 15 per cent comes through mother-to-child transmission.

It is amazing to find, in the video and booklet brought out by the IMAU, HIV-positive Muslim women coming out to say how they are coping with their condition. Thirty-year-old Sarah Wakabu is HIV-positive. When her husband fell ill, Sarah suggested that t hey take an HIV test. Not surprisingly, he refused. After his death in 1993, she took the test and tested positive. However, after counselling, training and support from IMAU, Sarah is today one of the IMAU's most active counsellors.

Her job with the IMAU is important to her because she has to support her two sons and several orphans left behind by her three sisters and one brother, all of whom died of AIDS. This happens in almost every Ugandan family, where the parents succumb to th is lethal virus. While the extended family can mobilise the resources to find a meal or two for the children, it is the schooling of AIDS orphans that poses the bigger challenge.

An average Ugandan family has seven children and although the government provides free primary education for the first four children, expenses have to be paid for the books and the uniform. Rehabilitating the orphans left behind by AIDS patients has been one of the biggest challenges faced by Uganda. The Kamwokya Caring Community runs an informal school where training is provided for vocations such as brick-laying and carpentry. The free noon meal is an incentive for the children to attend school. "Othe rwise they'll end up on the streets, become HIV-positive and leave behind more orphans," says project coordinator Francis Mbaziira.

Rehabilitating girls is a much bigger challenge and many orphan girls, who find it difficult to earn a living, end up as commercial sex workers. Brick-laying, even if chosen as an option by a girl or two, is scoffed at as being too macho for girls. Tailo ring is not too profitable as the market is flooded with readymade garments. Of late, they are getting trained to provide services in the beauty business.

The Kamwokya Caring Community has tried the micro-credit option of giving loans to women, but soon gave it up. "Many of our donors say that we should give micro-credit and recover the loan. We've tried it but it doesn't work," says Charles Serunjosi, a m ember of the executive committee of the NGO.

Serunjosi gives the example of an HIV-positive widow with six children who had taken a loan from the NGO. "She fell sick, couldn't work and spent the money. Because she couldn't repay, she disappeared from the house and started hiding from us, with the r esult that she wouldn't come for her medicines. When our counselors tracked her she was dying," says Serunjosi.

The main objective of the Kamwokya Caring Community is to get the community involved in AIDS prevention and control programmes and provide care to HIV-positive people. It has trained 50 community health workers who help in counselling and caring for sick people. Says Claire Yiga, who is in charge of the organisation's clinic for terminally ill patients: "We don't give them money. But what they get from us is a heart." Initially the clinic had 300 patients. "Most of them have died but we've prolonged lif e for so many people and helped them to die peacefully and with clean hearts," says Claire Yiga.

FROM Kamwokya to the British NGO Mildmay International is a leap from the poor to the rich. The former's office is located in the middle of a slum; the latter, built at a cost of 3 million pound, is spread over a lush green seven acre site. With its sim ple but elegantly constructed buildings and spotlessly clean interiors, this referral centre has attracted criticism as being too elitist.

Mildmay International's group medical director Dr. Veronica A. Moss says: "Because our buildings are beautiful, there is a misconception that we're expensive. We're not. We give the same courtesy, respect and time to both the paying and non-paying patien ts. Because we're a referral centre, we're not overwhelmed by numbers and can give our patients the time they need. The palliative care we give allows many of our patients many years of good health between episodes of illness."

Over 10,500 patients have visited this referral centre in the last two years. But the most striking part of its services is the section for children. About 300 HIV-positive children are registered with its child centre and some of them have even gone bac k to school. "But we do lose a lot of children as children tend to go down the hill much faster than infected adults," says Dr. Moss.

The policy of transparency and head-on attack against HIV/AIDS has reversed Uganda's HIV graph which was shooting upward. It has brought down the prevalence rate from 30 per cent in the early 1990s to 10 per cent. Condom use has gone up by 40 per cent. A ccording to latest statistics, about 60 million condoms are being used in Uganda annually.

But yet, the sheer numbers and the visible face of HIV/AIDS, the people it kills and the survivors it devastates in those families, can overwhelm even the most committed of social or community workers. Says Dr. Moss: "Watching so many people, specially c hildren, die is indeed painful. It hurts. We grieve with the families and also among ourselves. But at the same time it is very rewarding to be able to do something and to know that you've helped those with physical and emotional pain. The families feel that they can come back to you for further support or comfort. It is very rewarding."

She relates the story of a man who, walking along the beach one day, saw it covered with thousands of starfish which were dying as they were out of water. Suddenly he saw a young girl throwing the starfish back into the sea and asked her: "You can't help all these... What difference can you make?" Throwing one more into the water, she said: "It makes a difference to this one."

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