The Ugandan experience

Print edition : September 02, 2000

Uganda is a success story in the battle against AIDS, but its situation with respect to healthcare in general is dismal.

T.K. RAJALAKSHMI

The disease grips us tight Dear colleagues, sit and listen to us, the disease came determined to wipe us out What shall we do, we unmarried girls? Take a test, take a test with your admirers What shall we do, we unmarried boys Take a test, take a test with your fiancees The disease came to wipe us out, take precautions Who are you, the ones affected by this disaster? We are from Iganga The disease came to Kampala, to Jinja to Iganga and everywhere Take a test all of you, take a test and let all your partners take a test, for the disease is real.

THIS is ''Florence's song''. A Ugandan, Florence is a member of the National Community of Women Living with AIDS or Acquired Immune Deficiency Syndrome. She is one of the innumerable people who have not only learnt to live with AIDS but have gone ahead and given support to other victims of the condition.

Uganda, described as the "pearl of Africa", is one of those few African countries that have come out with an open policy on dealing with AIDS, having given up on the policy of denials two decades ago. Rated as one of the success stories in controlling AI DS, Uganda under President Yoweri Kaguta Museveni, has for the last one and a half decades carried on a direct programme to check the threat. The numbers of HIV (human immunodeficiency virus)-infected persons and AIDS-related deaths were staggering in th e mid-1980s. Although it has only 10 per cent of the world's population, sub-Saharan Africa accounted for 71 per cent of the 34.3 million people estimated to be infected with HIV at the end of the century. Worldwide, some 18.8 million people have died of AIDS, and according to World Health Organisation (WHO) and UNAIDS (the joint United Nations Programme on HIV/AIDS) figures, sub-Saharan African accounted for more than 14 million such deaths.

In Uganda, AIDS was first noticed in 1983 when the country was in the grip of a civil war, the economy was in ruins and the health infrastructure was rendered ineffectual. A new disease was reported on the western shores of Lake Victoria, in the fishing village of Kasensoro in Rakai district. It was euphemistically called "slim" as people after contracting it got emaciated. The Health Ministry dispatched a team of investigators to the area. Blood tests revealed the condition.

Stigma and denial were the norms in the predominantly agricultural and patriarchal society that characterised most of Africa. By 1993, an estimated 1.5 million Ugandans - about 15 per cent of the adult population - were estimated to be living with HIV. T he National Resistance Movement Party of Yoweri Museveni got to work and garnered the support of all individuals and organisations that mattered, including the clergy from at least two dominant religions. The results are there for everyone to see.

Surveillance reports conducted by the Ministry of Health in the mid-1990s indicated a decline in the rate of HIV infection in Kampala and some other urban areas. A further decline in the HIV infection rate, coupled with definite changes in patterns of se xual behaviour, especially among young people, was observed. Interactions with young people in Kampala by this correspondent revealed that AIDS and HIV were hardly taboo subjects, at least in the urban milieu: people are aware of the dangers of unprotect ed sex. Two persons have contributed to making AIDS an "open issue": Museveni and the late musician Philly Lutaaya. Lutaaya went public with his HIV positive status in order to make people come out to test.

A book titled Open Secret, which was released on the occasion of the International AIDS conference held in Durban in July, traces the transition from denial mode to admission mode and outlines the saga of a people who want to deal with the situati on collectively.

Incidentally, it was around 1983 that HIV was identified as being the cause of AIDS. The epidemiological situation in Africa was quite different from that in the developed world. While HIV mainly affected gay men and drug users in the latter, in Africa i t was transmitted through heterosexual contact, and the poverty factor played an important role. Incidentally, this was one of the reasons for South African President Thabo Mbeki wondering aloud in recent times about searching for an African solution to what seemed an essentially African problem.

Museveni set up an AIDS Control Programme in October 1986, some nine months after he took charge of the government. This was a turning point for Uganda in more than one way. In fact, it was Cuban President Fidel Castro who told Museveni at the summit of the Non-Aligned Movement in Havana in 1986 that some Ugandan soldiers sent to Cuba for military training had tested HIV positive. Museveni announced that Uganda was under the threat of AIDS.

The rate of growth of HIV infection, which peaked in the early 1990s, subsequently began to decline in the very same surveillance sites where it was reported initially. WHO approved the comparative surveillance procedures, which had been set in motion by the AIDS Control Programme. Distinct changes in attitudes and patterns of sexual behaviour were noted, especially among the youth; these included a sharp increase in the use of condoms from 15.4 per cent to 55.2 per cent among men and from 5.8 per cent to 38.7 per cent among women; a drop by nearly 50 per cent in the number of men and women indulging in sex for money; and a 9 per cent decrease in the incidence of casual sex among young men. These changes were observed over a period of six years from 19 89.

A similar decline in the rate of HIV infection was observed among women visiting ante-natal clinics. The best part of the findings was that the decline in HIV infection was most pronounced among young women with secondary school level education, the grou p that originally had the highest level of HIV infection. One drawback was that data on HIV prevalence in rural areas were difficult to access.

A long-term study by the Uganda Virus Research Institute and the United Kingdom based Medical Research Institute revealed that the rate of HIV infection in the adult population had declined from a peak of 8.2 per cent in 1989 to 6.9 per cent in 1998. Dur ing the 1990s, the rate of HIV infection among pregnant women at ante-natal clinics in several parts of Uganda also reported a rapid decline. Overall, HIV prevalent amongst adults decreased by the end of 1998. There was no tangible explanation either for the rise in the number of HIV cases in Uganda, or for its decline. A combination of factors - an aggressive campaign generously funded from abroad, the determination to bring the issue of the scourge into the open, and a strong political will - has have gone into the success story.

The campaign started off by creating public awareness, by putting posters and leaflets to good use. Initially the fear that AIDS kills did result in stigmatising a good number of people. However, the approach gradually changed on the basis of the idea th at prevention campaigns should not be fear-based but rather information and counselling-based. By 1990, the government had successfully impressed upon the people that AIDS had to be dealt with. At the same time, it gave extra attention to the surveillanc e centres and testing and counselling procedures. But since the HIV infection rates did not abate, a multisectoral strategy involving the community and its leaders was adopted. Various Ministries worked on a component of the AIDS Control Programme. The U gandan AIDS Commission was set up in the early 1990s. It also roped in religious leaders to address the issue.

External support also began to pour in. (It has declined considerably now, much to the chagrin of the Ugandan government.) According to a government estimate, over 70 per cent of the funding for HIV/AIDS-related programmes was provided by external agenci es. The slash in funding, a feature of the late 1990s, has been explained as having much to do with the reduced HIV prevalence rate.

Ironically, while large sums were pumped in to HIV/AIDS programmes, the other health problems of Uganda remained largely unaddressed by the international community. By the end of 1997, there were some 1,020 organisations involved in AIDS-related work, ac cording to the AIDS Commission. The problem of malaria, historically the biggest killer here, continued to be ignored. In one of the villages this correspondent visited in Rakai district, where AIDS reportedly affected a very large number of families, ma laria continues to be the biggest scourge. These facts are borne out by the National Health Policy Report for 1999.

One significant aspect of the prevention strategy was the condom use, which faced some difficulty in the beginning. The government came to terms with this quickly. The campaign picked up, and the demand for condoms grew. Prevention as a strategy was more cost- effective as the government still could not ensure free supply of anti-retroviral drugs to the affected. One of the most successful among the various community initiatives has been TASO, or the AIDS Support Organisation. TASO was set up in 1987 by some HIV positive individuals. Today it is one of the best-known agencies in the area of promoting openness about AIDS. Counselling, nursing and the offering of medical care, and the provision of material and social support to families affected by the e pidemic are some of the areas TASO specialises in. Counselling units were opened in seven government hospitals and TASO opened clinics in these hospitals where people could get treated for opportunistic infections and other conditions associated with HIV /AIDS.

Along with these efforts, the concept of voluntary counselling and testing (VCT) assumed paramount importance. The AIDS Information Centre, supported primarily with external funds, was a nodal point in this area. The AIC was the first of its kind in Afri ca as until then the WHO had not endorsed the VCT as a valid strategy of HIV care and prevention. Counselling and testing had some positive impact in that people with HIV increased their frequency of condom use and reduced their number of sexual partners . By the end of 1999, some 4,50,000 people had been counselled and tested at an AIC centre. The barriers posed by the perceived stigma attached to AIDS were finally breaking down. In addition, the role of traditional healers in VCT activities was also re cognised, and a symbiotic relationship between them and modern healing practices was established. Hospitals were even found to referring patients to traditional healers for symptomatic treatment. One prominent organisation in Uganda working on these line s is the Traditional and Modern Health Practitioners Together against AIDS.

Apart from organisational effort, there were several notable individual initiatives. Among them was the work of Philly Lutaaya, who declared himself HIV positive and then embarked on a aggressive campaign through his music. Schools, colleges and even chu rches heard out Lutaaya's testimonies. Lutaaya died in 1989, and many suspected that it was not AIDS that killed him. Another living testimony is that of Major Rubaramira Ruranga, who was declared HIV positive in 1989 and now tours the country educating soldiers and civilians alike about the perils of AIDS. He has set up the National Guidance and Empowerment Network of People Living with AIDS.

Another organisation doing notable work is the National Community of Women Living with HIV/AIDS (NACWOLA). It has been fighting another kind of battle as well - in the domain of property rights.

One section that is given special attention is adolescents and their queries on physiology. Some newspapers specifically address these issues. Funded by the United Nations Children Education Fund (UNICEF), Young Talk and Straight Talk are t wo such monthlies, which cater to more than one million adolescents. Abstinence and condom use are the key areas addressed in them. Providing accurate information about sex and human reproduction and stimulating discussions among pupils and teachers have been some of the focal areas of these initiatives.

Even though the Ugandan experience on the HIV/AIDS front has been lauded the world over, of late there has been a gradual withdrawal of donor agencies. In a country where 44 per cent of the population lives on less than a dollar a day, where only half th e population has access to safe drinking water, where the per capita health expenditure is high and little of it is contributed by the government or donor agencies, this withdrawal of support is expected to have a spiralling effect on every sector. A goo d number of jobs created following the arrival of donor agencies stand affected. Uganda, for the developed world and the donor agencies, as far as AIDS is concerned, is "over the hump".

It is ironic that the overall health situation in the country is dismal as reflected in a 1999 National Health Policy document. Poverty, the report stated, is recognised to be the underlying cause of the poor health situation. According to the burden of disease study conducted by the Ministry of Health in 1995, over 75 per cent of life years lost to premature death were as a result of 10 preventable diseases. Perinatal and maternal conditions (20.4 per cent), malaria (15.4 per cent), acute lower respira tory tract infection (10.5 per cent), AIDS (9.1 per cent) and diarrhoea (8.4 per cent) together account for 60 per cent of the national health burden. Others at the top of the list are tuberculosis, malnutrition, trauma or accidents and measles.

Access to health services, especially in the rural areas, is equally inadequate. Even among the available services, many do not even provide the range of essential primary health services. More than 60 per cent of mothers are not attended by trained heal th personnel during childbirth. This is the irony of Uganda, which is a success story as far as AIDS is concerned.

However, the government has committed itself to focussing on those health services that have the largest impact on reducing mortality and morbidity rates. One redeeming feature has been the launching of a major poverty eradication programme with emphasis on the modernisation of agriculture, improvement of rural infrastructure, development of marketing opportunities, universal primary education, primary health care and water supply and sanitation. The success will depend eventually on the political will and the ideological commitment towards people that characterised Museveni's National Resistance Movement more than a decade ago.

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