HIV and AIDS in Uganda

Uganda is often held up as a model for Africa in the fight against HIV and AIDS. Strong government leadership, broad-based partnerships and effective public education campaigns all contributed to a decline in the number of people living with HIV and AIDS in the 1990s.

Although there is a lot to learn from Uganda’s comprehensive and timely campaign against the AIDS epidemic, emphasising Uganda’s success story must not detract from the huge consequences that AIDS continues to have across the country.

There are an estimated 1.2 million people living with HIV in Uganda, which includes 150,000 children.1 An estimated 64,000 people died from AIDS in 2009 and 1.2 million children have been orphaned by Uganda's devastating epidemic.2

back to top The history of AIDS in Uganda

Map of Uganda including population and life expectancy  

The history of AIDS in Uganda can be divided into three distinct phases.

The first stage saw the rapid spread of HIV through urban sexual networks and along major highways from its origin in the Lake Victoria region. Doctors in this area had become aware of a surge in cases of severe wasting known locally as ‘slim disease’, as well as a large number of fatal opportunistic infections.3 In 1982, the first AIDS case in Uganda was diagnosed,4 and the link between ‘slim disease’ and AIDS was clinically recognised. It was not until 1986 when the Ugandan civil war ended and President Museveni was firmly in power that the country had a major HIV prevention programme. By this time the country was in the midst of a major epidemic, with a prevalence of up to 29 percent in urban areas.5

Uganda’s first AIDS control programme was set up in 1987 to educate the public about how to avoid becoming infected with HIV. The programme promoted the ABC approach (abstain, be faithful, use condoms), ensured the safety of the blood supply and started HIV surveillance.6 Strong political leadership and commitment to tackling the rampaging AIDS epidemic was a key feature of the early response to AIDS in Uganda.

Prevention work at grass-roots level also began in this era, with a multitude of small organisations educating their peers about HIV. One of the first community-based organisations formed was TASO, The AIDS Support Organization, which was run by sixteen volunteers who had been personally affected by HIV/AIDS. TASO later became the largest indigenous AIDS service organisation providing HIV/AIDS services in Uganda and Africa, and providing emotional and medical support to many thousands of people who are HIV positive.7

The second phase of the Ugandan HIV epidemic ran from 1992 to 2000. During this period the HIV prevalence fell dramatically, from a peak in 1991 of around 15 percent among all adults, and over 30 percent among pregnant women in the cities,8 to around 5 percent in 2001.9

Presidents George W. Bush and Yoweri Museveni Presidents George W. Bush and Yoweri Museveni

It is thought the government’s ABC prevention campaign was partly responsible for the decline in prevalence. However, as treatment was not widely available in Uganda during this time the high numbers of AIDS-related deaths also contributed to the reduction in the number of people living with HIV.

The Ugandan government’s prevention initiatives continued throughout the nineties with high levels of funding from both the government and international donors such as the World Bank. In 1998, the government ran a trial to test the feasibility of rolling out antiretroviral treatment to people in developing countries.

The third phase of HIV/AIDS in Uganda has seen the stabilisation of prevalence from 2000-2005, and reports of a slight increase in prevalence since 2006.10

Free antiretroviral drugs have been available in Uganda since 2004. It is thought that the introduction of HIV drugs may have led to complacency about HIV as AIDS is no longer an immediate death sentence. Many experts have also speculated that Uganda’s shift in prevention policy away from ABC towards US-backed abstinence-only programmes may also be responsible for an increase in risky behaviour, as comprehensive sex education and condom promotion are no longer mainstream.

back to top Why might prevalence have declined?

The number of people living with HIV in Uganda fell dramatically during the 1990s. The interesting questions are what caused this decline, whether other countries can adopt similar methods, and whether the lower rates of transmission are sustainable.

The drop in HIV prevalence in Uganda in the 1990s cannot be attributed to a single factor. It is likely to have been a result of both a fall in the number of new infections (incidence), and a rise in the number of AIDS-related deaths.

Deaths: It has been suggested that the high number of AIDS-related deaths in the 1990s may have been largely responsible for the decline in the number of people living with AIDS in Uganda during this period.11 The reason so many people died in this decade is that there was no available treatment to delay the onset of AIDS, and high numbers of people infected with HIV in the 1980s were reaching the end of their survival period. In 2000 the Ugandan health ministry estimated that 800,000 people had died of an AIDS-related illness since the beginning of the epidemic.12

However, the high death rate alone may not account for the significant reduction in the number of people living with HIV in Uganda. Many other countries in sub-Saharan Africa experienced similar patterns of HIV incidence and death but did not experience a similar decline in prevalence.

New infections: It is likely that the number of new HIV infections in Uganda peaked in the late 1980s, and then fell sharply until the mid 1990s. This is generally thought to have been the result of behaviour changes such as increased abstinence and monogamy, a rise in the average age of first sex, a reduction in the average number of sexual partners and more frequent use of condoms.13 Uganda's entire population was mobilised in the fight against HIV and everyone was made aware of the consequences that risky behaviour could have for their country.

President Museveni encouraged input from numerous government ministries, NGOs and faith-based organisations. He relaxed controls on the media and a diversity of prevention messages 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. Music and educational tours by popular musician Philly Lutaaya (who was the first prominent Ugandan to openly declare he was HIV positive) also spread understanding, compassion and respect for people living with HIV.14

A World AIDS Day event at Port Bell, Kampala, Uganda A World AIDS Day event at Port Bell, Kampala, Uganda

Much of the prevention work in Uganda occurred at grass-roots level. Many organisations were often made up of people living with HIV educating their peers. These groups worked to break down the stigma associated with AIDS, and encourage an open discussion of sexual subjects that had previously been taboo.

The sheer scale of the HIV epidemic in Uganda is also thought to have been a major driver of behaviour change and the reduction in the number of new infections. The epidemic was very visible: in the 1990s the majority of Ugandans knew somebody who had died from AIDS and in 1995, 91 percent of Ugandan men and 86 percent of women knew someone who was HIV positive.15 Many villages experienced high numbers of deaths each month, houses stood empty, funerals were frequent and grandparents were increasingly becoming carers for their orphaned grandchildren. As antiretroviral treatment was not yet widely available in the 1990s, many people equated AIDS with a death sentence and it is believed that fear may have driven change in behaviour.

back to top The current situation

The current HIV prevalence in Uganda is estimated at 6.5 percent among adults16 and 0.7 percent among children.17 HIV prevalence is higher in urban areas (10 percent) than rural areas (6 percent).18 An estimated 43 percent of new infections occur among people engaged in mutually monogamous heterosexual relationships.19

Women are disproportionately affected, accounting for 57 percent of all adults living with HIV. Ugandan women tend to marry and become sexually active at a younger age than their male counterparts, and often have older and more sexually experienced partners. This (plus various biological and social factors) puts young women at greater risk of infection. AVERT.org has more about women and HIV.

The number of new infections (an estimated 120,000 in 2009) exceeds the number of annual AIDS deaths (64,000 in 2009),20 and it is feared HIV prevalence in Uganda may be rising again. There are many theories as to why this may be happening, including the government’s shift towards abstinence-only prevention programmes, and a general complacency or ‘AIDS-fatigue’. It has been suggested that antiretroviral drugs have changed the perception of AIDS from a death sentence to a treatable, manageable disease; this may have reduced the fear surrounding HIV, and in turn have led to an increase in risky behaviour.21

back to top The impact of AIDS on Uganda

AIDS has had a devastating impact on Uganda. It has killed approximately one million people, and significantly lowered life expectancy.22 AIDS has reduced the country’s labour force, reduced agricultural output and food security, and weakened educational and health services. The large number of AIDS related deaths amongst young adults has left behind over a million orphaned children.23

People living with HIV and AIDS in Uganda not only face difficulties related to treatment and management of the disease, but they also have to deal with AIDS related stigma and discrimination. Stigma and discrimination towards those affected by AIDS are visible at all levels of society from families and local communities to the government. President Museveni himself supported the policy of dismissing or not promoting members of the armed forces who test HIV positive, and in 2001 he suggested that a rival presidential candidate was unsuitable for office because he was allegedly infected with the virus. Discrimination has also been reported in the private sector, including mandatory HIV testing for new employees. As well as discriminating against those living with HIV, such attitudes are a major hindrance to prevention and treatment efforts.24

back to top HIV testing in Uganda

Recognising the vital role that testing plays in preventing the spread of HIV, Uganda was the first country in sub-Saharan Africa to open a voluntary counselling and testing (VCT) clinic.25

Women waiting for HIV testing and counselling in Wakiso District, Uganda A community based AIDS information centre provides HIV testing for adults and children

In 1999 the Ugandan Ministry of Health started a voluntary door-to-door HIV screening programme using HIV rapid tests in an effort to reduce the spread of HIV. This effort was intended to make HIV screening services accessible to more people, especially in rural areas where there were neither modern laboratories nor electricity to run standard HIV tests.26

Uganda has also begun to implement routine or ‘opt-out’ testing (whereby anybody who enters a healthcare facility is tested for HIV unless they specifically ask not to be) in some healthcare settings. Trials of routine testing had overwhelmingly positive results, showing that this style of testing identified those infected at an earlier stage of their infection (before they were symptomatic) and therefore increased their survival rate.27 A study in two large Ugandan hospitals with a high HIV burden found a high rate of routine testing uptake with only 5 percent of people refusing the test.28

In 2007, HIV testing and counselling was available in 554 of health facilities in the country. By the end of 2008, this number had risen to 812 and increased further to 1,215 in 2009.29 30

back to top HIV prevention in Uganda

Uganda is often cited as a rare example of success in a continent facing a severe AIDS crisis. The country is seen as having implemented a well-timed and successful HIV prevention campaign, which has been credited with helping to bring adult HIV prevalence down from around 15 percent in the early 1990s to around 5 percent in 2001.31

Yet, praise for Uganda’s prevention efforts has waned in recent years, with particular criticism levelled at US-backed abstinence campaigns. There are indications that Uganda’s HIV prevalence may once again be on the rise.32

The approach used in Uganda has been named the ABC approach - firstly, encouraging sexual Abstinence until marriage; secondly, advising those who are sexually active to Be faithful to one partner; and finally, urging Condom use, especially for those who have more than one sexual partner.

Abstinence

Abstinence is the most controversial area of Uganda’s HIV prevention campaign. Although it has always been part of the country’s prevention strategy it has come under scrutiny since 2003 following significant investment of money for abstinence-only programmes from PEPFAR, the American government’s initiative to combat the global HIV/AIDS epidemic. It is felt that PEPFAR has shifted the focus of prevention in Uganda from the comprehensive ABC approach of earlier years.

An educational sign promoting abstinence in a Ugandan primary school A sign promoting abstinence in a Ugandan primary school

PEPFAR is channelling large sums of money through pro-abstinence and even anti-condom organisations that are faith-based, and believe sexual abstinence should be the central pillar of the fight against HIV. Abstinence-only is also being encouraged by evangelical churches within Uganda, and by the First Lady, Janet Museveni.33

This money has affected the focus of HIV prevention in the country - some Ugandan teachers report being instructed by US contractors not to discuss condoms in schools because the new policy is 'abstinence only'.34 Dozens of billboards around the country have sprung up promoting only abstinence to prevent HIV infection and sometimes discouraging condom use. Some leaders of small community-based organisations also report they are aware that they are more likely to receive money from PEPFAR (which is the largest HIV-related donor to the country) if they mention abstinence in their funding proposal.35

"PEPFAR really shifted the emphasis to A and B [Abstinence and Being faithful] just because of the amounts of money being put into these programmes" Sam Okware, senior Health Ministry official and architect of Uganda's ABC model36

UN Special Envoy for HIV/AIDS in Africa, Stephen Lewis, has also said that PEPFAR's emphasis on abstinence above condom distribution is a "distortion of the preventive apparatus and is resulting in great damage and undoubtedly will cause significant numbers of infections which should never have occurred".37

Pro abstinence-only organisations have used Uganda as an example to indicate the success of their methods. But this is inappropriate, since the multiplicity of prevention methods used in Uganda mean that the decline in HIV prevalence was certainly not due to abstinence-only messages.

Be faithful

Being faithful to your partner – or ‘zero grazing’ - was the dominant message of early HIV prevention campaigns led by President Museveni. The term 'zero-grazing' comes from the agricultural practice of tying livestock to a post, restricting them to a zero-shaped section of grass.

Models of the epidemic and surveys from the late 1980s to 1990s show that encouraging fewer sexual partners was effective - the World Health Organisation reported that between 1989 and 1995 the number of Ugandan men reporting three or more non-marital sexual partners fell from 15 percent to 3 percent.38

Unfortunately, the early emphasis on avoiding casual sex appears to have lost its impact in recent years. A 2006 study by the Ugandan Ministry of Health found an apparent increase in multiple partnering. The proportion of sexually active Ugandans who reported having had two or more sexual partners in the previous 12 months increased from 2 to 4 percent between 2000-01 and 2004-05 among women, and from 25 to 29 percent among men.39

Use condoms

Condoms were not heavily promoted and distributed during the early years of the AIDS epidemic in Uganda, as the president felt they offered false hope that the epidemic could be stopped without curbing multiple sexual partnerships. It was not until the mid-nineties that condoms were widely distributed. The number of condoms delivered and promoted by international groups rose from 1.5 million in 1992 to nearly 10 million in 1996.40

The momentum of condom distribution was lost in 2004 when the Ugandan government issued a nationwide recall of the condoms distributed free in health clinics, due to concerns about their quality. Millions of condoms were incinerated, and by mid-2005 there was said to be a severe scarcity of condoms in Uganda, made worse by new taxes which made the remaining stocks too expensive for many people to afford.41

Some experts, including Stephen Lewis, believed that America was largely to blame for the shortages. Mr Lewis said:

"There is no question that the condom crisis in Uganda is being driven and exacerbated by PEPFAR and by the extreme policies that the administration in the United States is now pursuing".42

In June 2006, the Ministry of Health announced it had, with assistance from the World Bank, imported 80 million re-branded condoms for free distribution.43 However, in 2010 another shortage of free condoms was reported which a Ministry of Health official blamed on the long procurement process, erratic delivery and lack of storage space for condoms.44

Conflicting messages and problems with distribution appears to have had an effect on the number of people using condoms. UNAIDS found that condom use during sex with non-regular partners was reported by 20 percent, 39 percent, 47 percent and 35 percent of women in 1995, 2000, 2004–2005 and 2006, respectively, and by 35 percent, 59 percent, 53 percent and 57 percent of men.45

back to top PMTCT in Uganda

HIV treatment clinic waiting room at Kisiizi Hospital, Uganda A woman and her baby in an ART clinic waiting room at Kisiizi Hospital in Uganda

The Ugandan Ministry of Health began offering a free prevention of mother-to-child transmission (PMTCT) service in a small number of antenatal clinics in January 2000. The trial PMTCT programme included counselling and rapid testing for all women attending antenatal clinics and treatment for both mother and child following a positive diagnosis.

The results of the programme after two years were fairly positive, although there were large disparities in mother-to-child transmission rates in different areas, which were largely dependent on the number of staff at each facility.46 The drugs Combivir plus single dose nevirapine were used for PMTCT in higher level facilities, while the lower level health facilities with fewer resources continued to use single dose nevirapine only.47

The number of PMTCT service delivery sites was expanded between 2005 and 2007 with emphasis on providing services to rural populations. The number of health facilities providing routine HIV counselling and testing for pregnant women increased, raising the uptake of HIV testing to 80 percent of all women attending antenatal clinics.48 The proportion of HIV positive pregnant women receiving antiretrovirals for PMTCT increased from 12 percent in 2005 to 53 percent in 2009.49 50

According to the latest figures, 18 percent of new HIV infections in Uganda occurred through mother-to-child-transmission, although this figure may be higher as many births in Uganda take place outside healthcare facilities.51 In Uganda’s 2010 country progress report, PMTCT was placed high on the agenda with a target of halving mother-to-child transmission by 2012.52

back to top HIV treatment in Uganda

The scale up of HIV treatment in Uganda

Uganda was the setting for one of the first test programmes in Africa distributing life-saving antiretroviral medication (ARVs). The programme began in 1998 with the aim of assessing the feasibility of setting up and running an antiretroviral drug clinic 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.53

It was not until June 2004 that Uganda began to offer free ARV medication to people living with HIV as part of a five-year pilot programme. The initial consignment was funded by the World Bank, with future drugs to be paid for by a Global Fund grant of US$70 million and large grants from America's PEPFAR initiative.54 Initial drug roll out was fairly slow; by 2006 only 24 percent of adults in need of antiretroviral treatment were receiving it.55

The momentum of scaling up HIV treatment in Uganda was put in jeopardy following the suspension of funds from one of the country’s key donors. In August 2005, the Global Fund to Fight AIDS, Tuberculosis and Malaria suspended the disbursal of money to Uganda after financial irregularities were discovered.56 It was found that management of Uganda's grants was generally poor, and that significant sums of money had been diverted to activities not related to combating HIV/AIDS.57 Grant disbursement was restarted in November 2005, and in 2008 the Global Fund signed Round Seven of funds pledging $254m for HIV/AIDS over the next five years.58

The waiting room at an antiretroviral clinic, Uganda The waiting room at an ARV Clinic in Uganda

The current situation

Currently just over 200,000 people in Uganda are receiving antiretroviral treatment, an estimated 39 percent of those in need, according to the latest WHO guidelines (2010).59 The latest guidelines recommend starting treatment earlier and have therefore increased the number of people estimated to be in need of treatment. Under the previous guidelines, treatment coverage in Uganda would be 53 percent.60

Less than a fifth of Ugandan children who require treatment are receiving it.61 Stigma is cited as one of the main reasons for this; many parents live in denial about their child’s status.62 A further hindrance to providing treatment is that health care providers are becoming oversubscribed, with many being forced to turn away people seeking ARV treatment. Dr. Fiona Kalinda, Clinical Manager at the Joint Clinical Research Centre in Kampala said:

"The dilemma here is that we made a promise to patients. If they came here for HIV care, we said if you qualify for treatment, you'll get treatment. Now we have to tell them to go elsewhere."63

Dr Elizabeth Madraa, manager of Uganda’s AIDS Control Programme reports:

“The management of the whole supply chain is very weak and problematic… We are now moving slowly as a result of the stock-outs because if we spread out rapidly and ran out of drugs, it would be disastrous”64

Uganda aims to relieve the drug supply problems by producing its own generic drugs. In 2007, the Luziria factory opened in the capital Kampala, in partnership with the Indian pharmaceutical giant Cipla. However, it did not start manufacturing drugs until 2009. In March 2010, the factory received qualification from WHO to market and distribute drugs nationally and internationally. It is hoped that the factory, which has the capacity to produce at least 2 million tablets per day, will reduce the cost of drugs as well as the likelihood of stock-outs.65 However, President Museveni has voiced frustration that the drugs manufactured by the factory are not being bought by local health officials who instead continue to rely on the import of generic drugs from abroad, mainly from India.66

AIDS activists have also expressed concern that trade-related laws which enforce intellectual property rights might make it illegal for Uganda to produce, import and export generic drugs in the future.67 68

In 2009, HIV activists in Uganda protested against the diversion of earmarked funds from the purchase of antiretroviral drugs.69 This was closely followed by a recommendation by parliamentarians that Ministry of Health spending on HIV/AIDS increase from 6 percent to 15 percent of the national budget in order to effectively deal with the epidemic.70 A few months later, announcements made by the head of HIV programming in the Ministry of Health committed to delivering 60 billion Ugandan shillings ($26.5 million) each year to HIV treatment.71 Around the time of this announcement, it was clear that increasing demand and reduced donor funding was having an effect on the provision of HIV treatment. In March 2010 Peter Mugyenyi, the Director of the Joint Medical Research Centre in Uganda, spoke of turning away 'desperate patients' on a daily basis due to funding shortages.72 Such difficulties in providing treatment were echoed by other health facilities in Uganda who also placed an informal ban on the enrollment of new patients.73

In response to the ban on enrolling new patients, PEPFAR announced an injection of funds in September 2010, amounting to around $5.5 million for antiretroviral treatment.74 However, it was noted at the time by the US ambassador to Uganda that..."The US Government cannot - and should not - be the only source of funding for Uganda's HIV and AIDS prevention, care, and treatment efforts".75 PEPFAR's 2009-2013 strategy places increased emphasis on providing technical support for partner countries. In line with this new focus, PEPFAR has reduced funding for treatment programmes and in 2009-2010 funds for antiretroviral drugs fell by 17 percent. Considering that Uganda aims to have 240,000 people on treatment by 2012,76 Uganda must think about the sustainability of its HIV treatment programme, especially as 95 percent of the ARV programme is currently donor funded, mainly by PEPFAR.77

back to top The way forward

Uganda is at an important crossroad in the history of its AIDS epidemic. After a dramatic reduction in HIV prevalence following an early comprehensive HIV prevention campaign, there are signs that the number of people living with HIV in the country may be starting to rise again. The Ministry of Health has predicted that the current rate of new HIV infections is seriously impeding economic growth and will continue to do so, particularly as HIV and AIDS is affecting people in their most economically productive years.78

In order to avoid this, Uganda needs to take a serious look at infection trends and behaviour to identify why this rise may be occurring and how to remedy it. Experts believe that complacency and the ‘normalisation’ of AIDS may be leading to an increase in the risky behaviour that early prevention campaigns sought to reverse.

"People now think that because we have had HIV for so many years, it is a normal condition among the population."Kihumuro Apuuli, director of Uganda Aids Commission (UAC)79

Uganda clearly needs to revive and adapt its HIV prevention programme, moving away from abstinence-only initiatives to a comprehensive programme that incorporates not only abstinence, fidelity and condom use, but also HIV testing and the prevention of mother-to-child transmission of HIV.

References back to top

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