Death by stigma: The HIV patients in Malawi refusing life-saving medication

On her way home from the hospital in Nkhoma in rural Malawi, the headlight beam from Jacqueline’s motorbike falls on something unusual.

Pill bottles, perfectly white against the red earth, lie strewn along the dirt road amid broken glass and shreds of plastic waste.

She recognises them as the drugs she prescribes daily to men, women, and children living with HIV, dispensed from her office in the modest, tin-roofed HIV clinic at the Nkhoma hospital.

And yet without the medicine, her patients will die.

Nearly a million Malawians, or about eight per cent of the population, live with HIV – one of the highest rates in the world.

Decades of international investment in the country’s HIV/Aids programme means 95 per cent of HIV-positive people now have free access to antiretroviral pills (ARVs) that keep the virus at bay.

It is a remarkable achievement in one of Africa’s poorest countries.

Why, then, are full bottles of lifesaving ARVs – which campaigners fought for years to make affordable and accessible in Africa – lying discarded on the roadside?

The answer is stigma.

‘You give them meds... they throw them away’

In the West, the term has become little more than a buzzword. But in parts of sub-Saharan Africa, where life is fragile, to be stigmatised is to bear a permanent scar – one that can make the difference between life and death.

Pervasive myths, including the belief that people with HIV can spread the virus to others just by sitting in the same room or handling food, remain common in rural villages surrounding Nkhoma and have done since the HIV conspiracy theories of the early 1980s.

Despite years of campaigns aimed at dispelling such myths, a positive result can still result in job loss, divorce, eviction. In a country where over 70 per cent survive on less than $0.93 a day, such ostracism can be a death sentence in itself.

So the white pill bottles – instantly recognisable in a country where HIV is so widespread – are too risky for some patients to bring home.

“You give some people the meds, and on their way home, they throw them away. They come to the next visit and tell us they’ve taken all their tablets. But they have not,” Jacqueline, who has been a nurse at Nkhoma, the rural mission hospital that sits in the shadow of the surrounding mountains since 2017, told The Telegraph.

It’s important to stress that the progress made in the fight against HIV/Aids in Africa has been substantial over the last two decades.

Malawi is approaching the UN’s 95-95-95 goal: 95 per cent of people with HIV know their status, 95 per cent in treatment, and 95 per cent with suppressed viral loads.

Yet, reaching the remaining missing 5 per cent – the “last mile” – remains difficult.

Life-saving treatments are still being thrown away by patients, as they weigh the threat of the virus against social exclusion.

Nowadays, you can live with HIV with the right drugs. “It cannot defeat you, you can live with it and embrace it. But fear is a problem,” says Jacqueline.

As she speaks, a 29-year-old woman lies dying in the hospital’s medical ward, a one-story red brick building in the hospital’s grounds.

She’s been HIV-positive for almost a decade, visiting the clinic regularly but hiding her status from her community.

Despite frequent visits, staff discovered she wasn’t taking her medication, as viral tests showed her infection worsening.

“She lied to us, saying she took her meds, but her viral load in her blood kept multiplying,” Jacqueline explains.

“She’s a respected member in her village and didn’t want people to know. Now, she has Aids and may die, leaving her nine-year-old child.”

The woman – whose identity The Telegraph is protecting – now has a white blood cell count, known as CD4, of just 28. A normal CD4 range is between 500-1,500 and it may be too late to bring it up again.

For women, the pervasive fear is that their husbands will leave them if they are known to have tested positive for HIV. For men, the fear is they will not be able to work.

“Because of pervasive gender inequality, and patriarchy, men often blame women for bringing the disease into the home, because men are less likely to get tested for HIV and know their HIV status,” explained David Chipanta, UNAIDS Country Director and Representative to the Government of Malawi in Lilongwe, the country’s capital city.  

Women are nearly always the first to get tested for HIV, as they interact with the healthcare system more frequently, often during pregnancy or when bringing a sick child to the hospital.

In some cases, men will steal their medication for themselves, rather than being tested.

“We have many situations where a woman tests positive, and she’ll come back for the next appointment and tell us her marriage ended that day,” Jacqueline said.

“Sometimes it means women won’t take their medication at all in case the husbands find the bottles, other times they will keep the pills at friends’ houses.”

This often leads to missed doses, allowing the virus to multiply in their bloodstream, leaving them more vulnerable to illnesses like tuberculosis, the leading cause of death for people with HIV in sub-Saharan Africa.

Missed doses also increase drug resistance – a serious threat in the fight against HIV, particularly in Africa’s poorest countries, where treatment options are limited.

It also means thousands of men go without knowing their status, or without facing up to it.

“Most of the men who test positive are usually only picked up in the ward, because they are already in the hospital sick,” Jacqueline explained.

*Manisha, a 32-year-old woman who tested positive last September, told The Telegraph that her marriage ended when her husband learned of her HIV status.

Weighing just 38kg, she walks four hours each way to the clinic. “I’d like to take the mini-bus, but it costs 2,500 kwacha [$1.44],” she said.

Manisha doubts she’ll remarry due to her diagnosis, despite the fact her daily medication means she cannot pass the virus on.

Part of the stigma attached to an HIV diagnosis is its financial consequences, a major factor in why men might choose to leave their wives if they test positive so they don’t have to economically support them.

Men avoid hospital – until they get really sick

Though treatment for HIV/Aids is free, there are steep costs attached to the management of the disease.

In Malawi, a visit to an HIV clinic costs around $2.15 for transport alone – more than double most daily wages.

For those who cannot afford it, journeys on foot, often lasting days, not only mean a loss of income but the added expense of essentials, like food, along the way.

To add insult to injury, Malawi’s under-resourced healthcare system relies on ‘guardians’ – friends or family who care for patients’ basic needs during hospital stays.

Without a guardian, a patient’s most basic needs – including being fed – won’t be met, meaning guardians must sacrifice days or even weeks off work to care for a family member.

The Telegraph saw hundreds of guardians camped outside of Nkhoma, many begging passers-by for food to feed their loved ones.

For men, they might avoid testing or treatment because of the knock-on effects on employment. “Sometimes the assumption is that people with HIV are too weak to work,” a student health worker at Nkhoma said.

“It’s really difficult for the men to open up and come to the hospital until they get really sick,” Jacqueline added.

The Telegraph only saw one male patient over two days at Nkhoma.

Jacqueline said this is common. In some of her rural outreach clinics, the divide between female and male patients can be upwards of 90/10.

*Francis, a 50-year-old retired school teacher, announced proudly that he had never missed an ARV dose as he was dispensed his next supply – 90 pills for the forthcoming three months.

He was diagnosed alongside his wife in 2014. He struggles to feed his family and is stick-thin.

Finances aren’t the only reason people are scared to reveal they have HIV.

When HIV first hit Africa in the 1980s, it instilled a deep culture of fear that has proven difficult to shake.

Rumours took root and lingered: HIV was branded a disease of prostitutes, homosexuals, and drug users. People believed it could be contracted simply by looking at someone or sharing a meal.

Many governments and religious leaders were reluctant to admit they had an epidemic on their hands, adding to the air of secrecy and suspicion.

Congo banned discussions of HIV in the press, Zimbabwe discouraged doctors from listing Aids as a cause of death, and South Africa prohibited HIV education in schools.

HIV/Aids campaigners faced violent reprisals – Gugu Dlamini, a South African activist, was infamously beaten to death by neighbours after publicly disclosing her HIV-positive status.

Criminalisation of homosexuality and sex work – both major risk factors in the contraction of the disease – often add to an air of fear and secrecy.

Despite decades of awareness campaigns, dangerous myths have proven persistent in some of Africa’s most impoverished and undereducated communities, passing from one generation to the next.

“Most people still associate an HIV infection with people having multiple sexual partners and that kind of thinking. People are scared to lose their partner and get divorced so that really does affect treatment compliance,” Chipanta, told The Telegraph.   

For those on the frontlines, it’s a difficult reality to face when treatment is now free and accessible in a way it never was before. “It’s a small disease, it can’t defeat you,” nurse Jacqueline told The Telegraph.

“When we’re on the way home, you see bottles along the road,” she says. “[We think]: why didn’t you tell us you didn’t want the drug so that somebody else could benefit?”

“If they don’t want to adhere, we tell them to make a decision. Are you going to take the drugs or not? If you are not ready now, you can leave the drugs. When you’re ready, come and find us,” she added.

Nkhoma Hospital relies almost entirely on donations. As a mission hospital, it sources much of its funding from churches both in Africa and abroad, mostly the US and Switzerland, and even then struggles to make ends meet.

Some wards don’t even have soap. Doctors – even those working in the highly infectious tuberculosis wards – sometimes don’t have access to simple PPE like masks, gloves, or aprons.

The hospital is committed to making every resource count. Seeing those discarded pill bottles, for staff here, is difficult.

Whilst there are potential solutions to help with medication compliance, they’re expensive.

The injectable antiretroviral drugs cabotegravir and rilpivirine, administered together every two months, are among the most effective treatments and could allow those with HIV to receive treatment discreetly from friends or family.

They are currently only available in high-income countries like the UK and the US, and remain prohibitively expensive in Africa.

In 2023, pressure from UNAIDS and other NGOs led pharmaceutical company ViiV Healthcare, which owns the patent, to allow certain manufacturers in 90 low- and middle-income countries to develop generic versions, which could be game-changing but have yet to materialise.

Mandeep Dhaliwal, Director of UNDP’s HIV, Health, and Development Group, told The Telegraph that despite a growing cohort of countries achieving widespread treatment plans, there hasn’t been enough investment in and roll out of work to address stigma, discrimination, and criminalisation of HIV across Africa.

“There’s that 5 per cent that we’re not getting to and new infections are going up in a lot of places,” she said.

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