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AIDS in Africa - Uganda

 

 

Why is Uganda interesting?

Uganda is one of the few African countries where HIV prevalence rates have declined, and it is seen as a rare example of success in a continent which is facing a severe AIDS crisis. Uganda's policies are credited with having brought the prevalence rate down from 15% in the early 1990s to 5% in 2001. At the end of 2003, the government and the UN say that only 4.1% of adults had the virus. The country is seen as having implemented a well-timed and successful public education campaign.

More and more money is being channelled to Africa, especially by the US which has pledged $15 billion to fight HIV/AIDS in resource-poor countries. Uganda is lucky enough to be one of the countries on President Bush's list and many other countries are being urged to follow its example.

But the results seen in Uganda don't have a simple recipe, and with so many lives and such large sums of money at stake, it is important to look carefully at what has been done there.

Background

Uganda is estimated to have a population of about 23-30 million. The extreme mortality of AIDS has had an effect on this figure, which would otherwise be higher. As another consequence of AIDS, healthy life expectancy in Uganda is only around 42 years. It was estimated in a UNDP report that 51% of the population did not have access to healthcare facilities in 2001. Uganda achieved independence from the UK in 1962.

Uganda contains over 18 distinct ethnic groups, a similar number of languages, and several religions. Most newspapers and television broadcasts use English as a common language. Over 80% of the working population is employed in agriculture, and the population growth is about 2.9% annually.

Today, much of Uganda remains mired in a conflict between the Lords Resistance Army rebels fighting against government-backed militia. The conflict has claimed many civilian victims, with both sides targeting civilian populations, and atrocities such as the mass amputation of limbs reportedly not being uncommon. There have been recent indications that the conflict may be ending, but much of the North of Uganda is still considered too dangerous to visit .

During the conflict LRA, rebels have abducted thousands of children - conservative estimates place the number of children abducted at a minimum of 20,0005. About 20% of those abducted are girls most of whom will be forced into 'marriages' or given to senior commanders as rewards and incentives. Some children manage to escape, and among those who have done so, about 50% have some type of STD. Among children who have been in captivity for longer, this rate rises to 85%.

The rates of HIV infection among the abductees or the LRA rebels are unknown, but are thought to be very high. Rehabilitation centres for abductees have been offering HIV/AIDS testing to children in their centres in recent years, and have found 13 out of 83 children tested to be HIV+. The youngest was thirteen. Three of the girls had children of their own, and at least one has since died of AIDS.

HIV prevalence levels amongst the LRA troops are worrying for another reason - thee have been many reports of mass-rapes and of deliberate HIV infection, often used against civilian populations. In urban areas there are reports of tens of thousands of people gathering together in city centres every night to sleep in 'safety of numbers', which makes them vulnerable to sexual exploitation. The war has now continued for 19 years.

HIV has not only a social but an economic cost. HIV / AIDS related expenses in Uganda cost the public services over sh3billion in 1999, and the country's GDP has fallen. Of this sh3billion, sh192m was for burial expenses. AIDS is known to hamper efforts to reduce poverty, and indeed, often increases the numbers of people living in extreme poverty. As AIDS usually kills sexually-active adults, it tends to strike hardest against a country's labour-force. The impact this has on economic revenues negatively affects the educational and health services and leaves behind orphaned children and grand-parents, an additional burden on the community or the state.

During the early 1990s, national adult HIV prevalence peaked at around 15% and exceeded 30% among pregnant women in the cities. At the end of 2003, adult prevalence was estimated at 4.1%, and an estimated 530,000 people were living with HIV/AIDS, according to UNAIDS/WHO.8 This reduction in HIV prevalence has not been seen in countries neighbouring Uganda, so seems unlikely to be a natural decline. But with other countries suffering under a high burden of HIV prevalence, the drop is one that many people would like to imitate. The debate is - why did HIV prevalence in Uganda decline? And how can this decline be replicated?

Timeline

The data in the timeline below are taken from a number of different studies. The graphed data shows UNAIDS/WHO median HIV prevalence rates by year amongst antenatal clinic attendees in major urban areas.

AIDS in Uganda was initially known as 'slim' due to its physically wasting characteristics. It began to spread in Uganda on the shores of Lake Victoria in the late 1970s.10 It is from here that many theories suggest HIV spread to the rest of the world. If the HIV epidemic did indeed start in Uganda before it did in other countries, then Uganda's HIV epidemic might be said to have had something of a 'head start' on other national epidemics.

1982 The first AIDS case in Uganda was diagnosed. Between 1982 and 1986 there was little understanding of what AIDS was, and it was not known that it was caused by HIV. During this period the epidemic was largely addressed at local levels with communities caring for those infected and affected by deaths.

1986 President Yoweri Museveni responded to the emerging HIV crisis in Uganda swiftly, embarking on a nationwide tour to tell people that avoiding AIDS was a patriotic duty, and that they should abstain from sex before marriage and then go on to remain faithful to their partners and to use condoms. Uganda's Health Minister announced to the World Health Assembly that there was HIV in Uganda, and the first AIDS control program in Uganda was established. It focused on providing safe blood products, and educating people about risks.

1987 16 volunteers who had been personally affected by HIV/AIDS came together to found the community organisation TASO. A program was established to control the spread of HIV in the military.

1988 The first national survey to assess the extent of the epidemic was conducted and found the average prevalence in the population to be 9%

1990 The AIDS Information Centre was formed to provide voluntary counselling and testing.

1991 Prevalence among pregnant women aged 15-24 peaked in this year at 21%. UNAIDS estimated data indicates that national prevalence peaked at 15% in 1991.

1992 The government adopted a multisectoral approach to addressing the epidemic and coordinating the response to it. HIV prevalence in young pregnant women in Uganda began to decrease between 1991 and 1993.

1994 Various governmental departments - for example, Agriculture, Internal Affairs, Justice, etc - established individual AIDS control Program Units. The government borrowed $50million from the World Bank to fight the epidemic, with the Ugandan government and other donors making this up to a total of $75million to set up the Sexually Transmitted Infections Project.

1995 Uganda announced that it had observed what appeared to be declining trends in HIV prevalence.

1997 Ugandans participated in a study of using anti-retroviral drugs to prevent mother-to-child transmission of HIV.

1998 Prevalence among pregnant women aged 15-24 had fallen to 9.7%. The Drug Access Initiative was established to lobby for reduced prices for antiretroviral (ARV) medication which can improve the health of an infected person, and the establishment of the infrastructure necessary to allow these drugs to be generally accessible.

1999 The Ugandan ministry of Health started a voluntary door-to-door HIV testing programme using rapid tests.

2000 The government began to 'mainstream' HIV / AIDS issues in Uganda's Poverty Eradication Action Plan.

2001 The World Bank agreed to spend $47.5 million over the next five years on Uganda's AIDS prevention and treatment programs. UNAIDS estimated data indicates that national HIV prevalence had fallen to around 5% in 2001.

2004 The non-governmental organisation National Guidance and Empowerment Network released a report saying that Uganda's HIV prevalence rate is actually 17% - more than four times the official rate. Experts have claimed that the study is inaccurate, but admit that the HIV problem in Uganda may still be much worse than official statistics indicate.18 In the same year, the Foreign Minister was 'outed' by a national tabloid newspaper as having died from an AIDS-related disease. His family and government denied this, showing that some stigma is still attached to the disease.

What do HIV prevalence and incidence mean?

When talking about HIV and AIDS figures, the terms 'incidence' and 'prevalence' are used.

HIV 'incidence' is the number of new cases of HIV in the population during a certain time period. People who were already infected before that time period are not included in that figure - not even if they are still alive and HIV+ during the time period. Due to limited data-collection, incidence data for Uganda is difficult to find, but one example is that USAID said that in one site, Masaka, incidence fell from 7.6 per thousand per year in 1990 to 3.2 per thousand per year by 1998.

HIV 'prevalence' is given as a percentage of a population. If a thousand truck drivers, for example, are tested for HIV and 30 of them are found to be positive, then the results of a study might say that HIV prevalence amongst truck drivers is 3%. This does not mean that all the truck drivers in a country have been tested, and it gives only a very limited hint of what the prevalence might be in another group - for example, old people.

HIV prevalence in developing countries is often difficult to measure - partly because much of the population, as in Uganda, does not have access to healthcare facilities and relies on traditional medicine. Therefore, HIV prevalence tends to be measured at whatever points the people do have contact with health staff. This is often at antenatal clinics or STD treatment centres.

Obviously, this does not give a full picture of the spread of the epidemic in the country as a whole - the former will give an indication of the prevalence rate amongst sexually active women, the latter generally amongst presumably sexually non-monogamous adults. As a general rule, however, it seems apparent that a prevalence rate of anything over 10% in any population indicates an extremely serious problem.

Given that HIV incidence is the figure which tells about new infections in a population over a period of time, this is often more revealing that prevalence figures. A society which shows regularly declining incidence figures is one which is experiencing fewer and fewer new infections, something which is certainly desirable.

How accurate are the prevalence figures?

It is hard to be sure about the exact prevalence of HIV amongst Uganda's population. What UNAIDS/WHO prevalence rates do exist are taken mainly from women who visit pre-natal clinics.

In a country which has very poor healthcare infrastructure and many people unable to access what does exist, it is very difficult to assess HIV levels. Much of northern Uganda is involved in civil war between the LRA and the army, and efforts there predominantly focus on caring for refugees and providing food. Many people in this part of the country have been killed or injured by the fighting, and at least 1.6 million have been displaced. Condom availability amongst people in Internally Displaced People's camps is low.

At least one recent study has challenged Uganda 's official statistics, saying that the HIV prevalence levels in Uganda may be much higher than reported. Whilst there have been claims that the methodology of that study was flawed, it suggests that the problem might not be accurately reflected in the official statistics.

Why might HIV prevalence have declined?

According to the best statistics available, the HIV prevalence rate in Uganda fell dramatically during the 1990s. A declining prevalence rate indicates a lower proportion of positive people in the population. This could result from a fall in the number of new infections (incidence) or from a rise in the death rate among HIV-positive people, or from a combination of both factors.

New infections

It is probable that the number of new infections peaked in the late 1980s, and then fell sharply until the mid 1990s. This is generally thought to have been the result of behaviour change. Increased abstinence, a rise in the average age of first sex, a reduction in the average number of sexual partners and more frequent use of condoms are all likely to have contributed.

In the late 80s and early 90s, condom use rose steeply among unmarried sexually active men and women, and since the mid 1990s, condom promotion and distribution in Uganda has increased dramatically. It is thought that this has helped to keep down the number of new infections in recent years.

Deaths

There is no precise data on the number of AIDS-related deaths which have taken place. The reasons for this are several - lack of healthcare facilities able to diagnose either HIV or AIDS cases in patients, and many deaths having gone unrecorded, or recorded as the results of opportunistic infections.

It has been suggested that an increase in the death rate may have been largely responsible for the drop in the number of people living with HIV that occurred in the late 1990s (though not for earlier declines). In the absence of widespread antiretroviral treatment, any rise in the number of new infections will almost inevitably result in an increase in the death rate a few years later, as people reach the end of their survival period.

It is clear that a huge number of HIV+ people have died in Uganda since the epidemic began, and a sufficiently high number of deaths could certainly result in a decrease in HIV prevalence figures. However, it should be noted that many other countries in sub-Saharan Africa experienced rapid increases in HIV incidence at the same time as Uganda, and, although they are similarly likely to have experienced large numbers of deaths, have not yet seen any substantial decline in prevalence. This suggests that the decline seen in Uganda wasn't a natural occurrence, but rather that it was the result of something that was done differently in Uganda.

Why was Uganda's response so effective?

The approach used in Uganda has since been named the ABC approach - first, encouraging sexual Abstinence until marriage; secondly, advising those who are sexually active to Be faithful to a single partner or to reduce their number of partners; and finally, especially if you have more than one sexual partner, always use a Condom. A number of factors helped to encourage people to take up these strategies.

Communication

It seems that the message about HIV and AIDS has been effectively communicated to a diverse population by the government and by word of mouth. Ugandan people have themselves to thank, in part, for the reduction in the HIV prevalence rate. Much of the prevention work that has been done in Uganda has occurred at grass-roots level, with a multitude of tiny organisations educating their peers, mainly made up of people who are themselves HIV+. There was considerable effort made towards breaking down the stigma associated with AIDS, and frank and honest discussion of sexual subjects that had previously been taboo was encouraged. There is a high level of AIDS-awareness amongst people generally.

Community action

Very early in the course of the epidemic, the government recruited the Ugandan people to help themselves in the fight against HIV/AIDS. One of the first community-based organisations to be formed was TASO, the AIDS Support Organization founded in 1987, a time when there was still a great deal of stigmatisation of people with HIV.

When it was first started, the organisation 'met informally in each other's homes or offices to provide mutual psychological and social support. Cohesion among these individuals was strengthened by the fact that they were either directly infected with HIV or implicitly affected because their very close familial associates were infected'.25 TASO now provides emotional and medical support to people who are HIV positive and their families. It also works with other smaller organisations to educate the public about discrimination and about the dangers of HIV/AIDS.

Fear

A Cambridge University study in 1995 showed that 91.5% of Ugandan men and 86.4% of women knew someone who was HIV positive, and that word of mouth was the method by which most people were informed about HIV prevention. This indicates that one of the main reasons for people's behaviour change was their alarm about the risks and the extent of the epidemic. Many villages are experiencing several deaths each month, houses stand empty, and grandparents are looking after their orphaned grandchildren. Put simply, people are more likely to avoid risky behaviour if they know people who have died of AIDS-related illnesses.

Simple messages

In the early stages of the epidemic, the government responded swiftly, giving out simple messages about abstaining from sex until marriage, staying faithful to one's spouse, and using condoms. The key message was "Zero Grazing", which instructed people to avoid casual sex. More complicated messages about risky behaviour and safer sex were not spread until later, when there had already begun to be a decline in HIV figures.

Political openness

Since 1986, when Uganda's health Minister announced that there was HIV in the country, there has always been political openness and honesty about the epidemic, the risks, and how they might best be avoided. Also in this year, the President toured the country, telling people that it was their patriotic duty to avoid contact with HIV. This was a brave approach, as many politicians are reluctant to talk openly about sexual issues, but the openness paid off. The president encouraged input from numerous government ministries, NGOs and faith-based organisations. He relaxed controls on the media and a diversity of prevention messages - including 'zero-grazing' - spread through Uganda's churches, schools and villages. This frank and honest discussion of the causes of HIV infection seems to have been a very important factor behind the changes in people's behaviour that allowed prevalence levels to decline.

This contrasts sharply with countries like South Africa, which have lacked this political leadership in the fight against the epidemic. Uganda's entire population was mobilised in the fight against HIV and were made aware of the consequences that risky behaviour could have for their country. It is largely due to the Ugandan people that the epidemic appears to have been so well addressed.

Antiretroviral treatment

Antiretroviral (ARV) treatment can extend the healthy life of someone living with HIV. If other factors remain the same, and ARV medication helps HIV+ people to survive for longer, then HIV prevalence will increase. The introduction of ARV medication, however, can even contribute to reducing prevalence by presenting people with an incentive to be tested (those who know their status are more likely to change their behaviour).

Targets and results

Uganda began one of the first test programs in Africa distributing life-saving antiretroviral medication. It began in 1998 and aimed to see how an ARV programme could be set up and run in a resource-poor country. The patients involved had to pay for their medication, although at reduced prices. After the study was complete, the Ugandan Ministry of Health used the lessons it had learned to set up its National Strategic Framework for HIV/AIDS.

Only very recently, in June 2004, has Uganda begun to offer free ARV medication to people with AIDS. The initial consignment was funded by the World Bank, with future drugs to be paid for by a Global Fund grant of US$70million. Further funds have come from America's PEPFAR initiative.

Uganda's target was to have 60,000 on treatment by the end of 2004. According to UNAIDS/WHO estimates, this target was missed, and between 40,000 and 50,000 people were receiving drugs. It is estimated that 114,000 people are in need of ARV drug treatment in Uganda.

What difficulties are involved in treatment provision?

Very little work has been done in the north because it is so unsafe, despite Gulu province in the north having the highest prevalence rate of HIV/AIDS. It is feared that rates amongst the LRA, the army and displaced people are higher still. Due to the conflict only about a third of young people are enrolled in school, meaning that many do not receive adequate sexual health education. There is also an urgent lack of condoms and sexual health education, and many people in rural areas are unable to access healthcare facilities.

Many of the organisations which are doing relief work in the north naturally tend to focus on dealing with the immediate effects of the conflict - providing medical help and food. There are groups of American missionaries working in northern Uganda, but many of these are opposed to condom use, telling villagers that condoms don't work and to simply wait to have sex until marriage.

The prevalence figures given for Uganda are based on the results of testing pregnant women. There is little information about prevalence rates amongst large sectors of the population - for example children, the elderly, or men. This lack of demographic knowledge increases the difficulty of addressing the epidemic, making it harder both to appropriately target treatment provision.

What needs to happen now?

Uganda needs to build on whatever successes it has achieved so far. It still has an alarmingly high HIV prevalence rate, and unless a continued effort is made to keep people aware of the dangers of HIV then it would be quite possible for the prevalence rate to remain at this level or even rise again. There is disagreement over what the prevalence rate in Uganda actually is, and monitoring clearly needs to be improved - it's hard to treat people without knowing how many people need treatment.

In June 2004, 12 members of Parliament made public their decision to undergo a HIV test, encouraging the population that it is good to know their status. The current campaign focuses on this, saying 'it's better to know'. As treatment options grow, this will be increasingly true.

Uganda is one of the fifteen countries that receive most funding from America's US$15 billion PEPFAR initiative. Part of the aim of this initiative is an expansion of the ARV treatment programme. Given that Uganda has over half a million people living with HIV/AIDS, this needs to happen swiftly if a huge number of deaths are to be averted.

Treatment provision is now seen as being one of the best methods of HIV prevention. People who test HIV+ have two main needs - firstly the antiretroviral treatment that can prolong their lives, and secondly education to enable them to enjoy a reasonable quality of life whilst not passing the virus on to anyone else. It is unreasonable to expect people to volunteer for HIV testing if there are no facilities in place to provide treatment. Hopefully, as ARV therapy becomes more generally and affordable available, more people will be willing to know their status, and then to avoid onward transmission of HIV.
Challenges to funding

The Ugandan government, in spite of its early and swift action to address the HIV epidemic, has been accused of placing too high an emphasis on purchasing weapons instead of AIDS drugs. In May 2004, foreign donors including the European Union threatened to stop all foreign aid to the Ugandan government unless it channelled resources away from defence spending which has grown by 48% over the past two years. Christian Aid has recently noted a dangerous drift towards channelling money intended for HIV/AIDS spending in Uganda towards the 'war on terror' - essentially, military budgets.

What can we learn that will help elsewhere?

Gradually, more and more countries around the world are starting to realise that they must take decisive action if they are to avert a major AIDS crisis. More money is gradually being channelled to these countries, and, as they try to look for solutions, Uganda is coming under the spotlight. Given the decline that has been seen in its prevalence rate, it is increasingly being held up as an example of good planning and action.

Uganda receives significant amounts of funding from America, and US$1billion of the US$15billion PEPFAR money is being channelled through pro-abstinence and even anti-condom organisations which are faith-based, and which would like sexual abstinence to be a central pillar of the fight against HIV. This money is making a difference - teachers report being instructed by US contractors not to discuss condoms in schools because the new policy is "abstinence only"28. This is a dangerous change, and one which could easily reverse the good done in previous years.

Pro-abstinence-only organisations are increasingly using Uganda as an example to indicate the success of their methods - this is inappropriate, since the multiplicity of prevention methods used in Uganda mean that it's fall in HIV prevalence was certainly not due to abstinence-only HIV prevention methods. Indeed, abstinence-only HIV prevention methods were not then seen in Uganda, and the open and frank discussion of the sexual means of HIV transmission that took place is something that is certainly not a feature of the pro-abstinence-only agenda. Uganda's success was based not only on encouraging abstinence until marriage but also on encouraging fidelity thereafter and condom use. It involved pragmatic discussion of risky sexual behaviours, strong governmental leadership, and condom distribution.

Randall Tobias, the man leading America's AIDS-money distribution, accepts that the ABC approach in Uganda involved more than only abstinence, but a large cut of the money is still being channelled through Christian organisations. The plans drawn up by these faith-based groups tend to be ideological rather than evidence-based and can neglect the other important aspects of HIV prevention. Promoting sexual abstinence until marriage without looking at these other issues is a recipe for failure, and Uganda's example cannot be allowed to be mis-used in this way.

There are now so many people with HIV/AIDS in Uganda, and Africa as a whole, that their votes are increasingly being seen as powerful enough to swing elections. Politicians will have to be able to show that they have a definite plan for addressing the epidemic and to offer them something more than empty promises about medication that never arrives.

Unfortunately, there is no easy answer to a high HIV prevalence rate in a country. Uganda may have decreased its HIV prevalence but there have been many deaths in the country, and will yet be many more. There is no simple way to reducing a country's HIV prevalence rate - a number of different interventions are required. Foremost among them are a balanced ABC approach, committed political leadership, a willingness to discuss openly the ways in which HIV transmission can be prevented, and a vigorous response from communities across the country.