Monday, July 9, 2012

HIV/AIDS and Uganda's children

We were taken by surprise on Friday when the Minister for Education and Sports reported that one of the causes of the worrying increase in drop-out rates in secondary schools was the prevalence of HIV/AIDS among teachers and pupils. We knew of the drop-out, of course, but had assumed that it was all down to poverty, inability to pay school fees and inadequate support for learners. In fact, all these factors are connected and they all apply equally to children attending primary schools.

The Minister's reference to the impact of HIV/AIDS on schools coincided with the publication of the latest figures on HIV infections by the Uganda Aids Indicator Survey. Despite Uganda's past success in reducing infection rates from 18% in the 1980s to 5% by 2000, the rate has now risen from 6.4% in 2005 to 7.3% as of September 2011. The overall rate is still nowhere near as bad as in some southern African states, but it is the upwards trend which is worrying.You cannot separate what is happening to young people in terms of the impact of HIV/AIDS from what is happening across the country and in the lives of adults: their parents, teachers and neighbours, in particular. 

(Warning! This is rather a long post as I was trying to get my head around the issues. You are allowed to skip bits!)

Current rates of HIV/AIDS in Uganda

About 2.3 million people  in Uganda are living with HIV/Aids, an increase from 1.8 million in 2005. Rates of infection vary across the country. They are worse among people living in towns and cities - a rate of 11% for urban women compared with 8% for their rural cousins. Rates are higher in certain parts of the country: 9-12% in Masaka, Mpigi and Rakai to the south and west, where HIV/AIDS originated; and 11.4% in the Rwenzori region to the west and 12% in northern Uganda, which are both ex-conflict areas.  In the north, women aged 24-35 have particularly high levels of infection caused by sex slavery under the LRA, prostitution and sex for survival. Children have high infection levels because of mother-to-child transmission. However, things have improved. In 2004, the infection rate in the north was 18%. In contrast, the overall rate in eastern Uganda is currently 3.7%. 

Some groups are particularly vulnerable to HIV infection, for example long distance drivers and fishermen, who may engage in casual sex, and those in polygamous and multi-partner relationships. About 46% of new HIV infections are attributed to such practices. Nomadic pastoralists also have a high rate of 8-9%, particularly where cultural practices include sharing of women and widow inheritance. (Reported during the launch of the Prevention of Mother to Child Transmission campaign organised by a Church of Uganda community-based initiative in Kiruhura near Mbarara.) People living on the islands in Lake Victoria, mostly fishermen, have a 20% infection rate, reaching 26% in Namayingo district.  

Interestingly, middle class married people aged between 35 and 49 also have a higher rate of infection than the rest of the population. The Director of the Kabarole Research and Resource Centre (Rwenzori region) said of a recent study, 'It is ashaming to see the educated and uneducated alike making the same mistakes when it comes to adherence to healthy messages.'

HIV/AIDS and women

HIV infection rates are worse for women than for men. Last year alone, more than one million women tested HIV positive. Women represent 57% of all infections. The overall infection rate for women has risen from 7.5% to 8.3% compared with a rise for men from 5% to 6.1%.  (The Uganda Aids Indicator Survey) This is particularly the case for uneducated women, wealthy urban women, widows, divorcees, residents of northern Uganda and sex workers. Men pay more for 'live sex', putting women at risk. However, HIV prevalence is particularly high among married women. 

Women often don't realise that they are at greater risk, citing the fact that Ugandan men are the more promiscuous sex, which is true. A Ministry of Health study has found that only 34% of women, compared with 41% of men, have a real understanding of prevention and transmission of the disease. The extent to which they can provide accurate advice to their children is therefore questionable.  

So why is there a higher rate for women? Partly because of their biological make up but also because of the high rates of violence against girls and women, particularly rape and incest. Being forced into sex at an early age increases the chance of the virus entering the bloodstream by means of the resulting lesions. The teenage girl who becomes HIV positive following 'defilement' by her teacher, father or  neighbour is a common phenomenon. Secondary-aged girls may also agree to go with men, willingly or otherwise, to raise the money pay their school fees. (See our earlier post which referred to a recent report on the sex trade and secondary pupils:  Life of a secondary student: exams, fees and a whole lot more)

Many maturer women are at risk because of the promiscuous behaviour of their husbands, which is considered socially acceptable - and indeed, expected - in many sections of Ugandan society. One of the first pieces of advice we were given on moving here was never to ask about how many children a man had because his children were probably born from different women who did not necessarily know of each other's existence.

Girls in the Pokot and Sabiny clans of eastern Uganda risk infection during female genital mutilation, when the same razor blades are used for all initiates. (Incidentally, to avoid FGM, over 100 Pokot girls have fled their homes and gone to the Resident District Commissioner for protection this month.)

HIV/AIDS and young people

Worryingly, young people themselves are developing high rates of infection. 

Ugandan children under the age of 15 constitute half of the population - 17 million. Children represent 14% of all HIV/AIDS patients. Many others will not have been tested. 
During a recent HIV screening exercise in Kabarole schools (western Uganda), 10 out of 40 students tested positive. 

A 2011 study by the Uganda Health Marketing Group found a high rate of HIV transmission among young people aged between 13 and 24. The study named boda boda drivers (often school drop outs and usually in their late teens and early twenties) as a group particularly at risk. It is also a group frequently accused of sexually abusing teenaged girls. Overall, 45% of adolescents are estimated to have sexually transmitted diseases of one sort or another, but are said to be reluctant to go for treatment because of the stigma attached. (National Forum for People living with  HIV/AIDSs Networks in Uganda - NAFOPHANU) 

However, many cases of HIV infection in young people come about as a result of mother-to-child transmission, which is going to have an increasing impact on HIV within the population as a whole over the next few years as these children grow up. This is despite the fact that campaigns against mother-to-child transmission are claimed to be having some effect, with the incidence of paediatric AIDS down to 6% from 13% in 2007.

Uganda's original success in addressing the issue of HIV/AIDS was based on a simple ABC message: Abstinence, Be faithful, use a Condom and addressed to both adults and young people. The message was promoted on posters, in newspaper supplements, through radio broadcasts and in all schools, whatever the age of their pupils. In Uganda there has been none of the heart searching we find in western societies about whether primary-school children are too young for such a message. In a society where many families sleep in one room, mats and mattresses are shared and women are permanently pregnant, there is little that youngsters do not know about sex: except, of course, about how to avoid having it forced on them by adults. There is also very little they do not know about death. Death usually happens in the family and among near neighbours. Burials are within the family garden.

School walls and compounds are adorned with the simplistic exhortatory messages required by the PIASCY programme: the Presidential Initiative on AIDS Strategy for Communication to Youth.

We have no idea if pupils pay any attention to these messages. They are in the wrong language for parents to understand. Schools also have HIV awareness programmes, under PIASCY, although, strangely, the President has banned sex education lessons, undermining his own initiative, by the sounds of things. 

While the President says he recognises the motives of the NGOs which provide young people with information he warned, 'they should not encourage promiscuity and turn classrooms into bedrooms'. It is difficult to see how anyone could deliver the PIASCY programme without mentioning sex.

The NGO Reproductive Health Uganda (RHU) has defied the President's ban in a campaign targeting school girls: Protecting Young People's Reproductive Health through Artistes, which aims to impart life skills to girls through the medium of music. RHU rightly says that how sex education is delivered depends on the age of the child.

'Basing on the research we have carried out, we have noticed that girls in schools look out for reproductive health information from boy friends which has doomed their future since it's inaccurate,' said the Executive Director of RHU.

Children are certainly not being given enough information 
 on HIV/AIDS by their parents. In fact, the Rwenzori survey found very low levels of parental advice. Of the 922 adult respondents, 24.1% said they thought children got information elsewhere, 19.6% said they were too shy to speak to their children of HIV/Aids, another 19.6 said they had no time, 9.8% said they had limited time and 17% said it would increase immorality.

These figures do not sit well alongside a report published by Panos Eastern Africa in 2011 (Reaching the Unreached). The report stated that in Uganda 14% of young people aged 15-24 reported having sex before age 15 and 63% of young women and 47% of young men had had sex before age 18 (the age of consent in Uganda). Only 27% of young women and 47% of young men said they had used a condom during their last sexual activity. The same report stated that of the children who have been HIV positive since birth and are now over 18 years, 52% are in relationships. However, only 32% reported using methods to prevent transmission

Furthermore, while the government has put in place national policies on adolescent and child health to address the needs of young people with HIV/AIDS, once they drop out of school - which is more than three quarters of them - they are often too busy trying to survive to access the support available.

Uganda's appalling levels of teenage pregnancy will only fall if young people of both genders receive accurate information, if girls develop the confidence to withstand the blandishments and aggressive behaviour of both men and boys and if those same men and boys change their attitudes and activities. 

The rise in HIV/AIDS infection rates in Uganda

During the 1980s and 1990s, through ABC, the national policy on AIDs and Multi-sectoral AIDS Control Approaches, Uganda succeeded in reducing its levels of infections far below those elsewhere in Africa, despite the fact that it was here and in bordering Tanzania that AIDS started in the first place. In the early 90s, Uganda was said to have the highest rate in the world: 30%.

Now, however, about 130,000 people become infected every year (ie 353 every day), more than the number of those dying from AIDS-related illnesses (64,000 deaths annually, 175 each day). The Uganda Aids Information Centre says that this will increase to 150,000 new infections this year. For every new person starting on ARVs, there are three new HIV infections, a situation which is unsustainable. (Centre for Disease Control: CDC - Uganda) Uganda is the only country where HIV incidence has not fallen for more than 10 years. Rapid population growth is one factor: it means that the actual numbers of people infected do not decline.

And what has caused the reversal in trend? A number of factors are quoted, including complacency following the introduction of anti-retroviral drugs (ARVs) which enable people to live positively with HIV and often to a similar age as their non-HIV positive peers - Ugandan's life expectancy is now 55 years. An increasing number of women with HIV/AIDS are getting pregnant (with the risk of giving birth to HIV positive children), partly because ARVs boost fertility rates.  HIV/AIDS is no longer seen as a killer. 

Nevertheless, the general belief is that the increase in HIV infection has come about because of a change in message, or at least in emphasis. The change? Condom use is now being downplayed and abstinence emphasised.

Why this change of message? Not because of the Catholic Church. In Uganda, Catholic priests are, on the whole, pragmatic shepherds who understand the circumstances in which their generally very poor flock live and the temptations which they face. No, the change is being put down to the evangelical 'born again' Christians who dominate the elite and whose influence permeates right up to the very top of the government where important decisions are made. Continually 'casting the first stone', the born agains are behind the demonising of both homosexuals and sex workers. No Mary Magdelenes for them. 

The hypocrisy which such attitudes engender allows the 'sexual network' to flourish: multiple partners and young 'side dishes'  hidden behind a veneer of churchgoing respectability. Married people, strangely enough, are more at risk of infection than single people, and are responsible for much of the recent rise. By failing to accept the pressures on, and flawed reality of the lives of their fellow countrymen, the born agains are condemning a new generation of young Ugandans to the devastating impact of a virus which was, until now, pretty much contained. 

Worse, some evangelical pastors claim to be able to cure HIV/Aids through the power of prayer, not really all that different from the witchdoctors (sorry, 'traditional healers') who claim to be able to cure it with herbs. Unbelievably, the Minister of Health, herself a doctor as well as a pastor, was quoted as providing support for this view, causing a furore in the newspapers. The head of The Aids Support Organisation (TASO) has said that such statements from born again Christians have a significantly negative impact on the effectiveness with which his organisation can do its work.

Before the about turn in infection rates, the social acceptance of HIV as part of the Ugandan context had been increasing and with it the willingness of people to take steps to safeguard their own health and that of their families. More people have been getting tested, an increase from 13% to 66% among women and 11% to 45% among men. Testing enables earlier prescribing of ARVs. 

Access to ARVs is a major issue. The Uganda Aids Commission says that while about 550,000 people living with HIV/AIDS are eligible for ARVs, less than half are receiving them. Those who miss out are mostly women and children. Only 6% of infected children receive ARVs. A study by the NGO Reach Out Mbuya states that orphans and widows living in Kampala slums, many of whom come from northern Uganda, have no access to ARV treatment. Most households in such slums are headed by children. The NGO is reduced to paying for three months accommodation when patients enrol as they have no money and nowhere to live. On the lake shores in Masaka District, patients are known to share drugs because of shortages, hence failing to adhere to their treatment schedules.  Similar stories are told of drug availability in northern Uganda. The pressure is such that Ugandan hospitals are turning away patients.

Poor stock management means that many drugs in public hospitals have expired. (Auditor General's report) Patients with HIV/AIDS are placed on a waiting list and only have access to treatment when another patient has died. Fake drugs from Kenya are flooding Uganda. (World Health Organisation) Intermittent access to ARVs, fake drugs or irregular treatment can lead to drug resistance. Already 192,000 people, 12% of those living with HIV/AIDs, have developed drug resistance. (Joint Clinical Research Centre) Currently Uganda gets most of its drugs from India. Good news is that it is to quadruple its own production of ARVs by a local firm, Quality Chemical Industries Ltd, by the end of next year. 

Preventing babies being born with HIV

Women take an HIV test as part of their ante-natal care, and are encouraged to bring their partners with them. However, in Lira this year, the district HIV focal person said only 24% of partners agreed to be tested. If the partners of HIV positive women are not tested, the women tend to end up hiding their status and taking their drugs irregularly. The same issue has been found in other parts of the country, for example Masaka. At least 20% of those found out to be positive refused counselling, which means that they did not receive messages about safe sex and the protection of their family.

The aim of ante-natal testing is to provide specialised medical treatment to prevent mother-to-child transmission of the virus. Currently, 22% of HIV infections result from mother-to-child transmission: that is, 16% of women give birth to HIV positive babies. Last year that meant that 27,000 children were born with HIV. The priority is to get women to give birth in health centres so that mother-to-child transmission can be minimised. However, the major issues which Uganda hs in providing effective and safe maternal and neo-natal services means that two thirds of women give birth at home with a traditional birth attendant. Currently, 50-60% of babies who contract the virus are infected during labour and delivery, 25% from breast feeding and 15% during pregnancy.

Ibanda District recently reported that 10% of pregnant women were HIV positive. In Gulu District, 22% tested positive. Testing isn't always easy of course. A perennial topic in the middle pages of the newspapers is the problem of 'discordant couples': where one half of a couple tests positive and the other negative, often leading to recriminations and family breakdown. This is despite the fact that if treatment is started early enough, a positive partner has a 96% chance of not infecting his/her negative partner. 

However, in a country in which a high value is placed on male fertility, HIV positive men may still insist on unprotected sex and on their 'right' to impregnate their partner, not only risking their partner's health but also that of any unborn child. HIV positive women may find it difficult to withstand family and community pressure to breast feed their babies, particularly if they have kept their status a secret. Bottle feeding also has financial implications.

The impact of HIV/AIDS on children and families

An estimated 2.5 million children have been orphaned by HIV/Aids. Many will have actually seen their parents die of the disease. Such children suffer disproportionately from uncertainty, fear, anxiety, depression and post-traumatic stress-disorder. (Child empowerment officer, Mayanja Memorial Foundation)

For the last two decades, the effects of HIV/Aids have been blighting the lives of children, as the Minister for Education and Sports pointed out. Children living in households where parents are infected with HIV/Aids often have time-consuming domestic responsibilities which interfere with their schooling. They may also end up orphaned, living with grandparents or responsible for bringing up their younger siblings (what are called 'child-headed households'). They may have to move to another household which may be unable or reluctant to finance their continued schooling, particularly at secondary level. 

The Monitor (26/05/2012) wrote of a grandmother in Rakai, where Uganda's first HIV/AIDS case was reported in the early 80s, bringing up five grandchildren and nursing her sick daughter, who is suffering from the same 'strange disease' as her husband, who died a few years ago. The grandchildren, aged between four and eight, work at a nearby farm as labourers. The income they bring in is the only income the family has. None of the children goes to school. Their story is not uncommon in Rakai, where many children are engaged in farm labouring jobs. According to the Ugandan Bureau of Statistics, in 2006 about 1.8 million children across the country were involved in child labour: farming, fishing, transport, mining, construction, domestic service and the sex industry.

Families affected by HIV/Aids may not be able to grow enough food. Not only does this lead to children being malnourished, it is also one of the factors in Uganda's decline in agricultural productivity.

Children may also, of course, be HIV positive themselves, usually through mother-to-child transmission at birth or shortly afterwards. Sadly, many children with HIV are not told of their status by their parents or guardians, probably because of feelings of guilt and because the message is a hard one to give. As a result, many children are not told until adolescence, probably the worst time of all. They may live in denial, feel very angry or believe that they are going to die. Getting them to take their ARVs regularly may be difficult. Fortunately charitable organisations such as Mildmay and TASO and hospitals such as Mulago's Paediatric Infectious Diseases Clinic and the Infectious Diseases Institute provide counselling for young patients. 

HIV infection among children, of course, has significant implications for guidance and counselling in schools. Ugandan schools receive good advice about supporting children with HIV/AIDS and a number of recent national policies such as Safe Schools and Child-friendly Schools deal with some of the issues.

Another Monitor article (16/10/2010) focused on the life of an orphaned sixteen year old boy, Sam, born with HIV/AIDS, who later became blind when HIV affected his retina. His disabilities meant that he had to leave school: which would have been quite unnecessary if he had had the necessary support. Sam lived with his 80-year old grandmother in Gulu District, an ex-conflict zone in the north, having recently left one of the camps for internally displaced people.  Sam received some financial help from old school friends but little help of any kind from the rest of the family.

He said, 'Some of my uncles keep on telling me that when my grandmother dies, I have to leave the home.'

 NGOs do their best to support such children, for example Health Alert Uganda, which has provided support (tuition and scholastic materials) for over 2,500 children with HIV/Aids since 2006, and TASO which has provided ARV treatment and counselling to 810  children since 2004. At the time the article was written, TASO was supporting 250 children in school. Because donor support is falling, TASO had only provided services to 8,026 clients in 2010, down from 9,404. This year, TASO has had to close 11 of its centres across Uganda due to lack of funds, causing panic among patients in the north and east of the country.

How is the world helping?

Almost all the support for HIV/AIDs prevention and treatment is provided by the donor community - 85%. Uganda's health budget continues to decline as a percentage of the national budget and is well below the 15% target to which it is committed through the Abuja Declaration. The  U.S. Chargé d'Affaires, Virginia M. Blaser, was lambasted by the Acting Foreign Affairs Minister at the weekend for pointing this out. 

Of all the countries analysed by a recent report by the World Bank (Swaziland, Botswana, South Africa) on HIV/AIDS prevention, Uganda is in the worst situation because of its heavy reliance on donor funding and lack of any national government strategy to increase local funding. The US Mission's Public Affairs Officer, Dan Travis, told The Independent that the unsustainability of Uganda's HIV response was of 'deep concern'. It costs about 12 times the GDP per capita ($5,900) to treat a single person with HIV/AIDS. The cost is expected to rise to above 3% of GDP overall. The World Bank says that although Uganda's economy is one of the fastest growing, it is not growing enough to fund the increasing cost of HIV/AIDS treatment.

Of the $600 million which the US gives to Uganda every year, half goes to the health sector for the PEPFAR programme (the US President's Emergency Plan for Aids Relief), over $1.7 billion in all so far. PEPFAR agencies include USAID, the Centres for Disease Control, the US Department for Defence and Peace Corps. PEPFAR supports HIV testing and counselling, mother-to-child transmission programmes and male circumcision (a million over two years). Circumcision is claimed to reduce the incidence of HIV in men - not, however, in their partners. Of the 330,000 Ugandans currently receiving ARVs, 314,000 are directly supported by PEPFAR. The USA pays for 80% of Uganda's HIV/AIDS drugs. As a result of the recently-announced rise in HIV infection, and its concern that Uganda's fight against AIDS has slowed down, the USA is to review the PEPFAR programme in order to focus its work on the areas where it can have the greatest impact.

The big question is when - if ever - will Uganda start supporting its own programmes for HIV/AIDS, given that it has set a target to eliminate the disease by 2015 (National HIV Prevention Strategy). The US mission has announced that it will eventually pull out although it is currently increasing funding for paediatric HIV/AIDS to $25 million. This is in addition to the $15 million already in the budget to combat mother-to-child transmission and reduce the deaths of HIV positive pregnant women.. Michael Strong, the Coordinator of US agencies says that the US government has injected $400 million into health projects, including $300 million for the HIV/AIDS epidemic. However, the USA has understandably said that it cannot fight HIV/AIDS on its own. The previous US ambassador Jerry Lanier called on the Ugandan government to take a lead. 

How is Uganda helping?

Uganda is doing some things to curb the spread of infection, including providing bicycles and testing kits for village health teams. However, this is not the 'big' money it needs to eliminate mother-to-child transmission and prevent all new infections by 2015.

And now we have the issue of the debacle over the Global Fund (to fight AIDS, Tuberculosis and Malaria). No, not the last scandal; the new one, last week's.

For those of you not in the know, in 2005 the Global Fund Program was 'mismanaged' and suspended for eight months. Last year, the government had to cut its budget by Shs2 billion to pay back the money Ministers and others had stolen from the GAVI Fund (Global Alliance for Vaccines and Immunisation). The money was an advance payment to buy vaccines for TB and malaria. TB is often a result vulnerability caused by HIV infection. The three Ministers concerned are on trial but, in the usual way of things in Uganda, are gradually having the charges against them dismissed. Interestingly, the Ministers and their sidekicks, despite fighting the court action, are actually paying money back. Looks like an admission of guilt to me. The Public Accounts Committee was also concerned that money intended for medical supplies was instead used for 'sensitisation workshops' ie a good wheeze to hand over cash for 'facilitation' to public officials.

In February this year, the Global Fund cut its funding to Uganda because of corruption and mismanagement. Uganda only got $300 million while Rwanda, a tiny country, got $600 million, Kenya  got $800 million, Tanzania got $1 billion and Ethiopia got $1.2 billion.

In May this year, the audit report on the Global Fund showed that Uganda had failed to utilise 85% of the funds despite patients being in dire need of drugs.

Last week we had high drama. It turns out that the audit reports have unearthed 'inaccurate accounts and exaggerated expenditures', with money being paid into personal bank accounts. The police have been called in. In other words, the Global Fund has been plundered by corrupt officials yet again! The money includes Shs78 billion meant for malaria control. Malaria and HIV/AIDS are Uganda's most devastating diseases. (See our earlier post on the 700,000 annual deaths of chidlren from malaria: How to survive until you are grown up) Current estimates are that as much as $31 million has been stolen.

Theft on a grand scale indeed, and not once but twice!

The future

HIV/AIDS within the family leads to school children being malnourished, lacking love and care, being required to work instead of going to school and suffering from serious mental health conditions. Within the country it results in a dislocated and skills-deficient population which increasingly is becoming unable to feed itself.

The future of Uganda's children lies within Uganda's hands. Uganda, like many African countries, is rich, although most of its people are poor. It has substantial oil, gas and mineral resources, large tracts of good agricultural land and a growing economy. Potentially, Uganda has the resources to deal with HIV/AIDS and provide a future for its own children. However, to do that requires a choice, a choice between personal enrichment and collective approaches to funding care and treatment. The world cannot support Uganda forever.


  1. Hello, My name is Josh Kron, and I am a journalist writing about this article! I would love to speak with you! My e-mail is

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