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Small battles are being won in AIDS-ravaged Malawi

A refusal to educate in the 1980s has left a mournful legacy. Recent statistics show improvements but the victories are hard won as David Ralph discovered from a recent trip to the African country.  This article appeared in the Medical Independent 10 March 2011. 

Despite being located in the epicentre of the world’s worst AIDS epidemic in sub- Saharan Africa, HIV/ AIDS infection rates have declined in the small landlocked country of Malawi.  However, huge challenges remain if the progress that has been made is not to be reversed.

Malawians have good cause to celebrate their work in tackling the AIDS epidemic that has crippled the country for the last two decades.  The 2010 UN AIDS Report praised Malawi’s efforts to curb the spread of the virus. The report highlighted that prevalence of the disease in the key 15 to 24 age group – among whom infection rates are highest – has declined in the last five years, while overall prevalence of the disease has peaked.

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In a small health clinic in Lilongwe’s Area 3, Dr Claus Beeren pours studiously over stacks of manila folders piled high on his desk. Working here with Médecins Sans Frontières (MSF) for the last five years, Dr Beeren is consulting the medical records of his many patients, digging up the hard evidence to prove that health profiles are improving. “I have seen huge changes in the time I’ve been here,” said the Dutch native. “In that short time, we have changed attitudes about HIV so much.  I mean, I couldn’t open a clinic like this here five years ago. People just would not come. There was a huge stigma around HIV. People would be afraid to be seen here, because then all the neighbours would talk.”

Education

Along with other NGOs working in Malawi, MSF pressurised the government in 2006 into promoting a nationwide campaign to reduce the stigma and discrimination attached to HIV/ AIDS. Traditionally, a HIV positive diagnosis in Malawi was seen as a death sentence.

Popular views about the virus are clear from the many euphemisms the illness has given rise to. Translated from Chichewa, Malawian’s mother tongue, HIV/AIDS is variously referred to as the ‘black death’, the ‘departure lounge’, the ‘red card’, ‘excuse me, grave’.

“Those attitudes were such an obstacle,” Dr Beeren said, “so we lobbied the government to do something about it. They spent millions of kwacha on adverts and education programmes – and the results have been great.

“Now people volunteer for testing. In Lilongwe, up to 80 per cent of adults have been tested for HIV. A few years ago it was only mothers at antenatal clinics who got tests.”

And the queue of people outside Dr Beeren’s office is testimony to this changed perception. His working day, which starts at 7 am, is taken up with testing for HIV and other STIs, as well as writing prescriptions for patients already on antiretrovirals. The prescriptions can take a long time to explain to patients. Many of the patients are illiterate and cannot read the printed instructions on the medication’s packaging. “So what I have to do is take a piece of paper, then draw two lines beside a sun, and three lines beside a moon. So the patient then understands: two tablets when the sun comes up, three when it goes down.”

In the past, overworked doctors and other healthcare professionals often missed important details like these when working with HIV/ AIDS patients. But the health system has been strengthened further in combating the virus with the implementation of teams of community home based care workers now operating throughout every neighbourhood in Lilongwe.

Dr Beeren has trained hundreds of local volunteers in basic counselling techniques, allowing them to go out into their communities and help those diagnosed with the virus to cope with the psychological repercussions. “This strategy of getting locals on board has been a massive factor behind improving the HIV problem here. Because every family in Malawi has been touched by HIV at some point, they are now able to come together to help each other and discuss it openly.”

Lifting this shroud of silence that covered discussion of HIV/AIDS for many years in Malawi has helped people like Dr Beeren to perform small miracles daily, turning around Lilongwe’s HIV situation.

Scenes like those on World Aids Day when people openly declared their HIV status on the capital’s streets would have been unimaginable just a few short years ago.

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Comunity Home-Based Care drug box that villagers use to treat HIV in the community

Banda’s legacy

This most recent chapter in the history of HIV/AIDS in Malawi is an impressive response to the epidemic, as various AIDS education and prevention schemes have helped avert the escalating crisis. But despite these advances, successes in tackling the problem remain largely an urban phenomenon.

Even though awareness of the dangers of HIV/AIDS is almost universal among Malawian adults, most observers recognise that the message about HIV prevention is simply not sinking in in difficult to reach rural areas. Outside the towns and cities, people continue to die in shocking numbers from AIDS-related illnesses. Vincent Doyle, a development worker from Donegal working with Concern Universal in the rural district of Dedza in southern Malawi, said: “Infection rates are yet to peak here. Things are improving all the time in the city. But here, we could be facing a very bleak future.”

And this potentially devastating future scenario in rural Malawi is intimately linked to Malawi’s past responses to HIV/AIDS. It is only since the mid-1990s that Malawi’s leaders have accepted the scientific consensus on HIV/ AIDS. When the disease first surfaced in Malawi in the mid-1980s, the then president, Dr Hastings Banda, refused to acknowledge its existence.

Banda, an autocratic leader with little inclination to openly debate matters of public policy, banned discussion of HIV/AIDS in 1985, making it an offence to speak about the virus.

In 1987, concerned epidemiologists asked Banda to explain the massive spike in deaths in the southern district of Zomba where all the dead displayed classic symptoms of HIV/AIDS. Banda joked that this so-called illness, translating it to its French acronym, SIDA, was nothing more than a Syndrome Imaginaire pour Discourager les Amoureux – an imaginary syndrome to discourage lovemaking.

But as the disease swept through the country, and the international community pressed the President for a more serious response to what it saw as a dangerous epidemic, Banda’s stance grew more hostile. Echoing the sentiments found in many of Malawi’s neighbouring countries, Banda claimed that AIDS was just the latest manifestation of racist, white anxieties surrounding black sexuality, and that Western governments, worried about a population explosion in Africa, fabricated the illness in an underhanded effort to impose family planning on African countries. By the time Banda was forced from power in 1994, the prevalence of HIV/ AIDS in women tested in antenatal clinics stood at 30 per cent – a catastrophic rise from 2 per cent in 1985.

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Children in Bembeke village

Traditional

In a thousand small ways, the legacy of Banda’s refusal to face up to the AIDS epidemic can be felt today throughout the Malawian countryside.

While many campaigns designed to curb the spread of HIV have made for success stories, like Dr Beeren’s in the cities, these same programmes have failed consistently in the rural areas.

And the blame, many outsiders will argue off the record at least lies with the overweening influence of traditional Malawian culture in informing sexual behaviours.

For example, research by Concern Universal shows that, despite being constantly bombarded with messages about safe sex from NGOs and government health workers, condom use remains stubbornly low among rural Malawians.

“On paper, the reports on AIDS this year are fantastic,” said Vincent Doyle.  “But while slogans, songs and education programmes about AIDS have an impact in the cities, the villages are much more set in their ways.”

Unprotected sex
In many instances, men will often refuse to wear a condom with their sexual partners, as many see it as a slight to their virility. And, if a girlfriend or wife is seen as too keen on using a condom, this frequently raises male suspicions of promiscuity or infidelity. Many women, as a result, keep their fears silent, continuing to have unprotected sex with their partners.

And exasperating this risky sexual behaviour is the phenomenon of ‘multiple concurrent partnerships’, or MCPs, between men and women.

In many parts of rural Malawi, polygamy is common, with men often taking up to five wives. At present, these long term overlapping sexual relationships are the single biggest driver of the HIV/AIDS epidemic in rural areas.

Another group among whom cavalier attitudes about condom use are commonplace are the many Malawian men who cross the border every year to work in the mines in South Africa.

Prevalence of HIV/AIDS in the mining regions of South Africa is one of the highest in the world and, as various UN AIDS reports show, transactional sex between miners and sex workers is frequent in the miners’ camps. Sex workers around the mines rarely try to persuade clients to wear condoms, as ‘skin to skin’ sex pays double that of protected sex.

Sadly, when the men return to their villages in Malawi, many freshly infected with the virus, they spread it to their wives or girlfriends.

In many cases, these women then become pregnant, and unaware of the dangers of mother-to-child transmission, pass the disease onto their newborn children.

But it is not just a reluctance to use condoms among sexually active adults that hastens transmission of the virus in the villages. Inter generational sex between older men and young girls is another serious problem in the spread of HIV/AIDS. Vulnerable young girls, many of whom lack basic education around sex, are often the target of predatory older men. In many cases, older men give cash or in-kind presents to young girls living in extreme poverty in exchange for sleeping with them. And where girls refuse such an agreement, they risk being raped.

A further motivating factor for this type of sexual contact is the myth that sex with a virgin will cure HIV/AIDS – a belief still common in many places in rural Malawi. Other incorrect assumptions include the view that condoms do not prevent AIDS but in fact spread it – a view that the Catholic Church in Malawi did little to counter.

And adding to this muddled situation are the practices of traditional healers and witch doctors still popular throughout Malawi’s rural districts, many of whom promote a spiritual world view that malign spirits and evil forces cause sickness and death. For those who follow such beliefs, they may only ever get an accurate diagnosis when it is already too late to halt the onset of full-blown AIDS.

And yet another traditional practice facilitating the spread of the virus is the continued genital mutilation of young girls. In some remote areas, elder women share unsterilised blades to cut their daughters’ genitals during village initiation ceremonies – upping the chances of cross-infection.

But perhaps nowhere are the shortcomings of AIDS awareness campaigns more evident than in the rural schools. Children are often trumpeted as the most effective agents in promoting behavioural change. Despite this, evidence from a recent World Health Organisation (WHO) report shows that headmasters often bluntly refuse to incorporate new sex education classes into the school curriculum. Discussion of sex and sexuality remain taboo in traditional Malawian culture and many teachers admit they find it highly embarrassing to openly talk about sex-related subjects with students. As a result, a syllabus specifically tailored to teach the nation’s children about the dangers of sex and HIV has been largely sidelined.

Consequences

The consequences of these lax cultural attitudes towards HIV/AIDS prevention are, unsurprisingly, truly catastrophic.

Take the village of Bembeke, for instance. A cluster of thatched huts and livestock pens located on an escarpment of Mouth Dedza, the village is a treacherous four-hour journey over pre-modern dirt roads from Lilongwe.

In the centre of the village stands a one-roomed mud hut, outside of which sits Joyce Malcheda. A skeletal looking woman in her mid fifties, Joyce looks after John and Linda, her two grandchildren.

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Joyce Malcheda rests in the fields in Bembeke.  Joyce is raising her two grandchildren after their parents died of AIDS recently

Both John (11) and Linda’s (8) parents have recently died. Their father, Joyce said, worked for many years in the mines in South Africa. Two years ago he came back in bad health. After being diagnosed HIV-positive, he sold all the family’s livestock and other possessions to buy antiretrovirals.  But at a cost of 250 kwacha (€1) a day, the drugs kwacha (€1) a day, the drugs were unaffordable. He took the drugs sporadically, but died a year later. Whatever remaining resources the family had went on paying for his funeral.

Soon after her son’s death, Joyce noticed that her daughter- in-law, Rita, was suffering from severe diarrhoea and losing weight fast. Joyce told Rita to get a test at the health centre – a 50km journey away in the nearest town.

Last January, Rita scraped the money together for a minibus fare to Dedza. But she never returned – and just two months ago, Joyce learned from the village headman that Rita had died back in her own village with her relatives. When asked if the children have been tested for HIV/AIDS, Joyce begins to cry. “No. I can’t afford to send them to Dedza. I can’t even keep them in school anymore,” she sobs. “I don’t have the money. And now they have to work in the fields so we have something to eat.”

In many ways, the Malcheda family encapsulates the tragedy of AIDS in rural Malawi. The downward spiral of death and destitution that AIDS has visited upon them is not an uncommon occurrence in the countryside here. John and Linda’s lives offer a glimpse behind the staggering statistics – there are now more than 12 million ‘AIDS orphans’ living in Africa. And Joyce is but one of a growing number of grandmothers who are caring for this parentless generation.

AIDS-related deaths are highest among the 15-49 age group in Malawi. This means that those at the peak of their working lives go missing from the economy, with those left behind often unable to cope with the financial burdens imposed upon them. And the demographic implications are striking too. Most countries have an age distribution that is evenly tapered from the base to the tip of the pyramid-shaped population.

In Malawi’s case, the middle segments of this population pyramid are being eaten away, as it is young adults and the middle-aged who are dying in greatest numbers from AIDS-related illnesses.

Sadly, Joyce’s situation may be about to worsen. She recently got some bad news from her relatives in a neighbouring village. Her youngest sister died suddenly, and now the family want Joyce to take in one of her sister’s children.

“This is another mouth to feed,” Joyce says. “The responsibility is just too much.”

Every 20km or so on the long journey back from Dedza to Lilongwe, giant billboards advertising the ‘Heave Bound Funeral Parlour’ flash past. This is Malawi’s largest franchise coffin-makers.  By all accounts, business is thriving. Luckily for the parlour managers, the fields off the Dedza-Lilongwe road are planted with lush, green forests.

With funerals in most rural communities every day of the week, a ready supply of lumber is vital – if they are to keep the coffins coming.