The challenge – coping with AIDS in Africa

Condom valley, Limpopo Province, South Africa
Condom valley, Limpopo Province, South Africa (Paul Cowie/Flickr)

In Africa, 7 million people have AIDS, the acquired immune deficiency syndrome. 11 million more Africans have the HIV virus which causes the disease. Sub-Saharan Africa accounts for 65% of the world’s total number of HIV infected people. Initially, the epidemic was met by fear and denial in the continent. Then came despair and resignation. But attitudes are changing. Africans are slowly beginning to modify their sexual behaviour and to accept people who have the disease.

Original broadcast: 2004

Transcript

In Africa, 7 million people have AIDS, the acquired immune deficiency syndrome. 11 million more Africans have the HIV virus which causes the disease. Sub-Saharan Africa accounts for 65% of the world’s total number of HIV infected people. Initially, the epidemic was met by fear and denial in the continent. Then came despair and resignation. But attitudes are changing. Africans are slowly beginning to modify their sexual behaviour and to accept people who have the disease.

Radio Netherlands, the Dutch international service, presents “The Challenge – Coping with AIDS in Africa”. The programme is produced and presented by Eric Beauchemin.

The battle against AIDS in Africa has been described as a lost battle. Massive poverty and illiteracy make it difficult to reach people and convince them to change their behaviour. Governments don’t have the funds to carry out proper awareness campaigns or provide treatment to the sick and dying. And even today, many African governments are still reluctant to admit the full scale of the AIDS epidemic in their country. The result has been ignorance about the disease and how people can protect themselves. Zendela is an accountant who works for a bank in Durban South Africa. She discovered that she was HIV positive a few years ago.

I only knew that it’s a killing disease.  If you have AIDS, you’ll just die, not knowing after how long, not knowing how to live if you have AIDS, and not knowing how to go about getting help or getting support if you have AIDS. EB: But did you know how the disease is transmitted and did you know how you can protect yourself? Yes, I knew. I knew how can I protect myself but because it wasn’t all over, I hadn’t heard of anyone who has it in our community. We were ignorant, I would say that. We were seeing it and we were hearing it, but we thought it is not going to come near us. It’s an overseas disease, not a South African disease. That’s what we thought.

This belief is widespread, not only in South Africa but elsewhere. In a continent where polygamy and casual sex are common, the challenge has been to make people aware that sex has become a matter of life and death. According to Henry Ongunyo, a counsellor at the Kibera Community Self-Help Programme in one of Africa’s biggest slums in Nairobi, Kenya, people still tend to have a lackadaisical attitude towards sex.

They know AIDS can be gotten through sex, through blood transfusions and even mother to their children. But the most important thing is sex. Some people are assuming that they can without sex. They are avoiding the reality but we are trying to tell them that our people can stay without playing sex until the time reaches for marriage.

But since this message seems to be falling on deaf ears, condoms have featured highly in AIDS information campaigns throughout Africa. Nonetheless, even today, says Dr. Alan Smith of the University of Natal Medical School in Durban, many Africans remain suspicious of condoms.

The usage of condoms has been seen by black people as a means of limiting the birth rate, and they don’t like this. It’s seen rather in a way of family limitation rather than prevention of disease.

Africans’ traditional desire to have large families has just been one of a series of obstacles blocking the widespread use of condoms in Africa. Dr. Eleanor Preston White, an anthropologist at the University of Natal in Durban, has been advocating the use of condoms, particularly among the young, for several years now.

I remember when this whole thing began. I had a teenage daughter. She was about 17 in those days, and I got terribly, terribly criticised because I got a huge thing in the newspapers: Mother! Give your teenage daughters condoms! Oh God. The skies nearly fell. Letters to the editor: this wicked, immoral professor from the university who is leading our youth astray, etc., so I had the response in the next Sunday newspaper: would you prefer your child to use condoms or to be dead?

Some of the strongest opposition to condoms has come from the Catholic Church and other Christian denominations, which condemn sex outside of marriage. Even though 7 million people in the continent have AIDS and 11 million have HIV, the message remains largely unchanged. But in Uganda, the sheer numbers of infected people have forced the church to adopt a more pragmatic attitude. 1.5 million Ugandans out of a population of 17 million have HIV or AIDS. The epidemic has touched so many people in this central African country that the Anglican Church of Uganda has a special unit, known as CHUSA, Church Human Services, which runs an AIDS education and prevention programme. According to Reverend Sam Ruteikara, CHUSA’s provincial programme manager in the Ugandan capital Kampala, the church has not changed its attitude towards condoms, but it is trying to be more realistic.

The teaching of the church is very, very clear. If a person is not married and has sexual relationships, he’s committing a sin of fornication. That one, they have been teaching all the time. If people are married and they have extramarital relations, they are committing the sin of adultery. Therefore the church cannot go into re-explaining and re-issuing instructions about those, but we know for sure that people are continuing to commit those sins and acts and we think, as the government teaches, that if they want to use the condom, let them use them, but they should know what the condom is and how to use it properly.

Despite several years of officially supported campaigns In Uganda about the HIV virus, there’s still a great deal of ignorance about condoms. Ann Gumururua (sp?) of Dish, Delivery of Improved Services for Health, a non-governmental organisation funded by the United States, says she’s beginning to notice a change in people’s attitudes, but condoms have long been shrouded in myth and mystery.

When we go out, they ask us questions. We answer and we hope that they would tell others and conquer the misconceptions that have been brought about, that condom it breaks, that it will stick in the woman and maybe go around the woman and break your heart and she will die or she will have to be operated upon. That’s what many people say. But when you ask them: did you see someone who was operated? No, they told us that that was in another village. No one has actually come out and pointed out that this one had an operation, a condom was stuck in her womb and they had to remove it surgically. So I believe the tide is changing because people now openly speak about condoms. They are ready even to listen.

But even in countries where acceptance is growing, condom use is not necessarily increasing. In many areas, condoms are not sufficiently available or are beyond the means of most people. Population Services International in Tanzania is trying to change that. It wants to provide affordable condoms to everyone in this East African country. It sells its condoms according to the social marketing principle: first a demand is created for a new product. It’s initially sold at far below cost price until people are willing to pay more because the product has become as essential as a bar of soap or a tooth brush, for example. In Tanzania, Population Services International sells its condoms for 20 shillings a pack, that’s only a couple of US cents. The condoms are so cheap, says George Bananaku Hassan (sp?), the group’s operating manager, because they’re given free by the United States.

As we say, you leave a little bit of meat on the bone for the next man. So if a major agent buys 50 cartons, he’ll be buying the packet of 4, the equivalent of 7.99 shillings. Now when he sells down to somebody who buys a carton at a go, he will sell at the equivalent of 13.33 shillings, so he has already made something like 6 shillings. And even the final retailer, if he sells at 20, he’s got something like 7 shillings. So the profit margin element is the motivation for the private entrepreneurs to get involved in the project. But, of course, 20 shillings is very little. The project is subsidised by about 94%, but this is a beginning because part of this is we have to educate the population. If you’ve brought a new product on the market, we’ve got to create demand. We’ve got to resolve a lot of publicity and promotion. But we believe at some stage, maybe 3 to 5 years time, this will be like any other normal product on the market. And then when you come to forces of supply and demand, we should be able to start adjusting the prices in such a way that we reach some level where probably the project can even be self-sustaining, but without punishing the poor.

Population Services International is marketing its condoms under the name Salama, which has many positive connotations in Swahili. The Salama condom is making a name for itself because of its trendy ads, but Salama condoms are also of very high quality and are tested on arrival by the Tanzanian Bureau of Standards. Throughout the continent, the poor quality of condoms has been a barrier in AIDS prevention campaigns. High temperatures in the sun can cause rubbers to tear or break. Another obstacle has been the reluctance of men to use condoms. Nevertheless, the campaign is working.

When we started two years ago, I would drive around town with about 10 cartons in my car. And if I managed to sell about 2, I would come back a very happy man. Right now, I have two years in the project, I have an order of over 3500 cartons that I cannot deliver. We have tried to increase our packaging capacity but the orders are coming in faster than we ever anticipated.

It’s not only in Tanzania that the demand for condoms is increasing. In the slums of the Kenyan capital Nairobi, condom use is also rising, even among prostitutes or commercial sex workers.

Yes, they always use a condom because it’s easy for them because they have a clinic right here where they just go. EB: And you can get the condoms for free. Yes, they get the condoms free. EB: The men have no objections to using them? They have no objections, and if they object, they can take their leave. Every time she goes to the clinic, they give her a check-up, so she’s sure that she’s still HIV negative. She doesn’t want to become HIV positive, so she makes sure that if somebody doesn’t want to use a condom, they leave, and that is why business is so bad because a lot of people don’t want to use condoms, but she insists that they use them.

Health clinics and social marketing are just two ways of promoting condom use and creating awareness about AIDS and STDS or sexually transmitted diseases. Throughout the continent, drama groups are regularly performing in schools, churches and remote communities to get the message across in a mixture of English and local languages.

Drama Aid, based in Durban, performs mainly in Zulu and targets young people in particular because, as elsewhere in the continent, youths in South Africa start experimenting with sex on average between the ages of 12 and 15. In Africa, just as in other continents, the battle against AIDS is being waged on two separate fronts: information and awareness are essential to prevent more people from becoming infected. But treatment and care must also be provided for the 18 million people in Africa who have HIV or AIDS. According to Dr. Allan Smith of the University of Natal Medical School in Durban, throughout the continent, medical care is limited.

Essentially, we are only treating the infectious diseases that arise as a result of AIDS. We don’t direct any treatment against the virus per se because of the expense of AZT. This again is one of the difficulties in countries such as South Africa where you haven’t got a social security system and it’s very difficult to do follow-ups on patients. They don’t reappear until they are extremely ill, whereas in other countries in Europe and North America, they would be going to the doctor more regularly than they do in Africa.

Even though infected people don’t visit hospitals often, the epidemic is spreading so fast that medical facilities throughout Africa are being strained to the limit. In Zimbabwe, for instance, 50% of all hospital beds are occupied by people with AIDS. In some parts of rural Kenya, the figure reaches 80%. As the epidemic spreads, governments are having to increase funding for treatment. Over a quarter of Zimbabwe’s health budget is earmarked for AIDS, and the costs are likely to rise as the side-effects of the epidemic spill over into the non-infected population. Since AIDS suppresses the immune system, says Dr. Alan Smith, it also makes people more susceptible to certain diseases already endemic in Africa, in particular tuberculosis.

Anti-tubercular drugs normally work in conjunction with one’s immune system. This goes for all antibiotics. So if you haven’t got an effective immune system, then the drugs are less effective. The second problem is that where you’ve got rapid multiplication of any organism, there is greater propensity for mutation.  And with that greater propensity for mutation, you have the selection of those mutants that are not subjected to the effects of the antibiotic drug. So therefore you get drug resistant forms of the organism evolving. Now these are not limited then to the HIV patients. They are spread throughout the community.

As the number of drug resistant tubercular strains increases, doctors are having to use a wider variety of drugs to treat patients, which inevitably makes treatment more expensive. Africa’s AIDS bill is also increasing because of malaria, another endemic disease. Malaria weakens the body’s immune system, and for people with AIDS, the consequences can be fatal. But as a result of the HIV virus, malaria is also having growing repercussions on the general population, children in particular.

Young children are often brought into hospital with such severe malaria that they are severely anaemic, and they require urgent blood transfusions. I saw this when I was working in Nigeria and Ghana. There are no blood transfusion services readily available in the form that we accept in Europe and America. It’s a matter of obtaining consent to bleed relatives to give to the child, and in these countries where they can’t afford to do HIV testing, there isn’t the structure, these children are in fact transfused with infected blood.

As more and more people become infected, the cost of AIDS-related medical care is destined to rise even further over the coming years. The cost factor explains in part the growing desire to involve traditional healers and their relatively inexpensive drugs in the fight against AIDS. Throughout Africa, many traditional healers have claimed to be able to cure the disease. These claims have never been substantiated, but recent research in Uganda has shown that traditional healers are having as much or even more success than Western medicine in treating some of the opportunistic infections associated with the HIV virus, such as diarrhoea, severe weight loss and oral thrush. Even if a cure is eventually found, it’s likely to remain beyond the means of most Africans. So the challenge is to provide low-cost, effective support and care to infected people to help them cope with the disease and keep them motivated. In South Africa, where HIV rates are rapidly increasing, the authorities and non-governmental organisations are setting up groups to help infected people. Zindele, the accountant in Durban, was referred to one of these support groups after she was diagnosed HIV positive.

That’s when I started to feel a bit comfortable because I met people who were in the same situation as me. Others had children like I do. It was easy talking to them, but I decided not to tell my family because they don’t know anything. They only know what I used to know before I learnt that I’m HIV positive. It wasn’t easy for me.

Liz Taylor who runs the counselling group says Zindele’s case is quite typical because the stigma attached to AIDS remains great. Communities still tend to shun not only HIV infected people but also their entire family, creating severe strains within families.

They come very confused, very frightened with practically no support, and really difficult to get support because the basic knowledge and the basic information is not sufficiently out there for families to actually feel there’s no shame in this disease. They don’t understand that. It’s even fearful going into a group for infected people, even that is a big step forward because just in case somebody in the group is not as confidential about it as maybe they need it to be.

Even in Uganda where 1 person in 11 is HIV positive or has AIDS, confidentiality is a major concern. In the early ‘90s, an organisation was established to provide free, anonymous HIV testing and information about the disease. Initially the AIDS Information Centre only provided pre- and post-test counselling along with the test itself. But as the disease continued to spread, people wanted more information and more support, whether they were infected or not. So, says John Owen, one of the AIDS Information Centre’s project officers, they decided to create a post-test club.

Originally when it began, every Saturday afternoon people who were tested would come and ask questions, and we would look for experts in different fields. If it’s issues to do with TB with relation to AIDS, then we would get somebody from the hospital who is an expert in that. He gives a talk. What we were trying to do is to make people have access to the experts so that you have a chance to ask the person yourself. So we get different people: psychology, nutrition and that kind of thing. So that is where the post-test club developed from. So it’s a stop-gap before somebody goes to the next place, there is this place where somebody can have access to information, recreation and that kind of thing.

Because of the poor social services in Uganda, it’s sometimes difficult for people with HIV or AIDS to get follow-ups. So the AIDS Information Centre has a doctor on duty several times a week who also provides free drugs when they’re available. Another group in Uganda, TASO, the AIDS support organisation, is playing an even more active role in the fight against the disease. It’s the organisation Grace turned to in 1993 when she came down with persistent fevers. Grace is 26 and lives in the Ugandan capital Kampala. The results of her test were positive, and even though 1.5 million of Uganda’s 17 million people are infected, Grace needed the support of TASO to tell her family.

My family, they were neglecting people with AIDS. They feared contracting the virus and so I was very, very worried how I would communicate with my family when I have AIDS. I tried to get the courage. So I got a counsellor who counselled me and told me everything about the organisation and about supporting me, medically and everything. When the years went by and time went by, I got the courage. I found that the worries were not as the first time.

Grace has since become the lead singer in TASO’s drama group which goes to schools and churches to perform and tell people about AIDS. She also regularly attends a centre run by TASO on the outskirts of Kampala. Erasmus Okolokotanga manages the centre.

We have people who have AIDS, people who are HIV infected and people who accompany their family members to come and receive the services. There are also other people who are coming to seek information as far as HIV and AIDS are concerned. EB: I see a bunch of slices of bread over there and some jerry cans. Why is that? The bread and the flasks containing tea and somebody pouring tea. Actually while here we share with our clients a cup of tea as they wait to see their doctors, as they wait to see the counsellors. EB: It’s just to create a nice atmosphere also, to make people feel at home. Yes, and it’s also actually encouragement. EB: How often do the clients come and see their counsellors? As often as need arises. We don’t make appointments. It’s only on the medical side that we give an appointment of a fortnight.

EB: What is this here? This is our day centre care room. On clinic days, it is a waiting room. Those ones who can sleep as they wait for the doctor. And also on non-clinic days, it is used for other activities, that is tailoring, handicrafts and also as a room where the drama group practices their songs and plays. So here we have our day centre supervisor, Kate Najula.

Actually what we encourage people to do is get involved in a lot of activities and mainly some of these activities are income generating, so that they can raise some money to support their family. And while they are doing so, when they get involved in these activities, it occupies their mind. Instead of worrying about the virus, they concentrate on whatever activity they are doing. This helps them to have a bit of exercise, physical exercise, and it helps the mind to concentrate which helps them to be able to sleep and to be able to eat because they have been doing some work.

Traditionally in Africa, when people get sick, they depend on their extended family for support and for financial assistance. But the extended family has been breaking down because of growing urbanisation and poverty. In cities, people with HIV or AIDS often don’t have any relatives nearby. According to Dr. François Farrah, the Uganda country director for the UNFPA, the United Nations Population Fund, the same thing is happening in rural areas.

Even in the village where you would expect the large family network, the extended family, to prevail, particularly in the case of crisis or disease, actually the AIDS epidemic is producing just the opposite. The woman, for example, who has lost her husband, the in-laws wouldn’t want to take her in as has been the practice like in widow inheritance. Some of the children are left behind on their own. There is conflict in terms of some of the inheritance, like the land or the properties or what have you. So the woman at the end of the day finds herself almost on her own with children to cater for and to look after.

The breakdown of the traditional family is forcing people with HIV or AIDS to turn to other sources for support. But even governments and non-governmental organisations are overwhelmed by the pandemic. Lucy Shilling, the head of counselling and training at TASO, believes the only way to fight the disease is at the community level.

The communities are now beginning to get sensitised, to get a kind of awareness and to feel responsible, that after all they don’t have to stigmatise, they don’t have to discriminate. These people are still part of the communities. With time, as the problem has grown, almost every family has either a person infected or is affected.

As the AIDS epidemic spreads, more and more countries in Africa will find themselves in a similar situation. In Zimbabwe, for instance, 300 people a week are dying of AIDS, and health officials predict that 10% of the country’s workforce will die of the disease within the next two years. In Zambia, the World Health Organisation has predicted that by the year 2010, AIDS will have halved life expectancy from 66 to 33 years, and in Uganda, the figure will drop from 43 years to only 31. Given the scale of the epidemic, the challenge, believes TASO, is to learn to live positively. Kate, the supervisor the TASO day care centre, found out a decade ago that she’s infected. For her, positive living means showing others that despite the epidemic, life continues.

When you see people who are infected doing certain work, it encourages other people who have not come to come out. And when you see someone who is infected and has lived for over 10 years, it still encourages other people to come. And when you consider what that person has done for his family during that course of his infection, you realise the value of being counselled and being treated. When people stay here, we somehow become relatives. We normally call it the TASO family. So when you lose a member, you really feel hurt. But we have to counsel each other and support each other to overcome that stress because with AIDS, we say we are fighters. Once you are in a war fighting, if your friend dies, you have to find courage and continue the fight.

“The Challenge” was produced and presented by Eric Beauchemin. Technical production: Werner van Peppen. This has been a Radio Netherlands’ presentation.