‘They give me hope’: Beating HIV stigma with community support in Zimbabwe

When Wonder Mwatamawenyu tested positive for HIV as a young man more than two decades ago, he thought he had signed his death warrant.

His society told him that HIV and AIDS, which were spreading rapidly in Zimbabwe in the 1980s and 1990s, had no treatment.

Mwatamawenyu tested HIV-positive in 2003 after going to donate blood at a health facility near his house in Matika village, just outside Mutare in eastern Zimbabwe. “I was shocked. I did not believe it,” the 51-year-old father of six told Al Jazeera.

“I later got sick and health workers encouraged me to take antiretroviral therapy (ART) medicine which I have been taking since 2004,” the tall, wiry man said, referring to the standard HIV treatment that was first rolled out in the country that same year.

Mwatamawenyu is one of about 1.3 million people living with HIV in Zimbabwe today. In the 20 years since he was diagnosed, much has changed.

When ART was first introduced around the world, patients used to take a combination of many drugs, but the treatment is now available in fixed-dose combinations that allow people to take just one or two pills. Taken every day for the rest of a person’s life, ART remains the most accessible HIV treatment globally because it is effective in stopping the virus from replicating in the body and is cost-effective, particularly in low-income communities.

Though ART does not cure HIV and AIDS – there is no cure – it helps patients’ immune systems and reduces mortality and morbidity. The disease is also no longer a death sentence, despite its seriousness.

AIDS-related deaths peaked in Zimbabwe in the 1990s and new HIV infections were high in the early 2000s when Mwatamawenyu was diagnosed. But the figures have declined over the years because of interventions like ART, and awareness campaigns on preventing mother-to-child transmission.

For those living with the disease, many say the sense of community they have managed to build has been a lifeline – more than just the medical care.

Stigma

Mwatamawenyu, who speaks at a million miles a minute, is the preacher of a small religious group. He said that when news reached his congregants that he had HIV, most left him.

“They thought I was dying. About 70 percent left. They thought I could transmit HIV to them just through a handshake.”

People became aware of his health status because of his frequent visits to the local clinic, walking distance from his home, to collect his medication and for routine checkups, Mwatamawenyu said.

He had also lost his father to AIDS in the mid-1990s.

While his congregants were afraid, his family was always supportive, particularly his mother.

“She encouraged me to take ART,” he said, also adding that his wife was HIV-negative but passed away in 2007 from an unrelated illness.

Born and raised in Chimanimani, some 150km from Mutare, Mwatamawenyu shares his story with others who are part of a group of people living with HIV from their village.

Group member Ruth Mlambo, a mother of four, tested HIV-positive in 2002 when a doctor revealed that her husband was positive and had been taking ART medicine.

“He hid it away from me. It was painful,” the 53-year-old former bookkeeper and healthcare worker said, recounting the distressing memories.

Mlambo said they kept the diagnosis a secret from the community at the request of her shy husband until he passed away in 2004. When she finally revealed she had HIV, she faced stigma and discrimination.

“My late husband’s relatives did not know that he died from AIDS, so they accused me of cheating following his death,” said Mlambo.

Newly widowed and left to look after her school-aged children while struggling with her health, she was helpless and the future was uncertain, she recalled.

She has carried her scars since.

95-95-95

Last year Zimbabwe reached the Joint United Nations Programme on HIV/AIDS (UNAIDS) target dubbed 95-95-95, whereby 95 percent of people living with HIV should be diagnosed while 95 percent of those living with HIV should be on ART medication and 95 percent of those should achieve viral suppression.

This helps in reducing HIV transmission and mortality as the 95-95-95 target results in 85 percent of all people living with HIV with viral load suppression, according to UNAIDS.

More than 1.2 million out of 1.3 million people living with HIV in Zimbabwe are on medication, according to government officials. About 97 percent of those have achieved viral suppression.

Over the years, the numbers of people dying from AIDS have also been declining. In 2002, 130,000 AIDS-related deaths were recorded compared with 20,200 in 2021, according to a report from the UN Children’s Fund (UNICEF).

Behind these strides in HIV prevention and treatment are men and women like Mwatamawenyu and Mlambo who fought hard to change their predicament.

Two years ago, there was a successful campaign to remove a law criminalising the wilful transmission of HIV, because research showed that women were being charged for this crime when venturing out in search of healthcare.

Recently the government tried to sneak it back into law, but lawmakers resisted and it was removed.

Daniel Molokele, chairperson for the Parliamentary Portfolio Committee on Health, told Al Jazeera they spoke strongly against it. The Ministry of Justice was trying to get it recriminalised to protect minors, but gender activists said criminalising sexually transmitted infections violates human rights and increases stigma.

“We hope that in the updated version of the bill that clause around wilful transmission will be totally removed,” Molokele said.

Evellyn Chamisa, the national coordinator for the Network of Zimbabwe Positive Women, an activist group, said involving all stakeholders – especially policymakers and beneficiaries in everything from prevention and treatment to awareness – made successful strides in achieving the UNAIDS target.

“Letting the people own the epidemic and put them in front in programming is important,” she said.

Community support

Community health groups like the one Mwatamawenyu belongs to create a platform for people living with HIV to get counselling, financial resources and other social support.

Back in 2004, he said the odds seemed impossible, but discovering there were many like him was a huge relief.

“I joined some groups of people living with HIV and this was a boost. I had developed low self-esteem. They gave me hope,” said Mwatamawenyu, his smile bright.

Looking at ease, Mlambo said she started taking ART medication in 2014 after falling sick, but HIV and AIDS-related awareness campaigns on radio and in the community changed her life.

She also took on entrepreneurship projects and started attending counselling sessions, she said, adding that the idea was to keep herself busy so that she did not stress.

Groups of people living with HIV share an unbreakable bond and where there is a bond there is hope, said Mlambo.

A devout Christian who goes to the Anglican Church, she is also popular in her village, having appeared on national TV talk shows, in church and on different platforms, inspiring many with her journey.

Martha Tolana, an HIV/AIDS activist, said while there has been great political will in the fight against the disease in Zimbabwe, HIV support groups provide a haven for people living with it.

“Providing peer counselling, advice and support on appropriate nutrition, treatment and adherence support, dealing with stigma and discrimination, as well as livelihoods support has been a game changer,” she said.

“Home-based care also started in the support groups,” Tolana said, referring to psychosocial support given to people living with HIV in their homes by informal or formal caregivers.

Zimbabwe has also been making progress in reducing mother-to-child transmission. It is mandatory for pregnant mothers to get tested for HIV and if they are positive, they get medication to prevent transmission to their unborn baby.

Though the current mother-to-child transmission rate is eight percent, which is still high, it has declined from 30 percent in 2004, according to UNICEF.

Following the death of his wife in 2007, Mwatamawenyu remarried in 2009. His new wife has given birth to four children who are all HIV-negative thanks to the prevention of mother-to-child transmission.

“I made sure that the mother was taking medicine on time. The children are healthy,” Mwatamawenyu said.

Meanwhile, he said those congregants who left him in the 2000s are returning, a sign that people are now accepting him.

Even in the community, he now holds different leadership positions.

Marginalised groups

However, not everyone is on board. And experts say stigma and discrimination towards certain groups are still rife.

According to a recent Stigma Index by the Zimbabwe National Network of People Living with HIV (ZNNP+), a national umbrella body that represents and coordinates people living with HIV, stigma and discrimination against transgender people is at 97 percent, sex workers at 77.7 percent and men having sex with men at 62 percent.

Hazel Zemura, director of All Women Advocacy, an organisation representing sex workers in Zimbabwe, said while strides like access to condoms, pre and post-exposure prophylaxes and vaginal rings have been made to strengthen efforts to prevent HIV, sex workers still face significant hurdles accessing services.

“Sex workers often experience stigma and discrimination from healthcare providers in public health facilities, leading to fear and reluctance to seek services,” she told Al Jazeera.

Jane Kalweo, a country director at UNAIDS, said peer-led models and the promotion of community-led organisations to reach out to high-risk groups will enhance reach.

“Community-led monitoring will also address barriers to healthcare by troubleshooting where there are bottlenecks in terms of accessibility, appropriateness, affordability and timeliness of services,” she said.

“Social contracting of community-led organisations to provide services that should normally come from [the] government will also bridge the gap in service provision,” she added.

Molokele, an opposition member of parliament, said access to health services for sexual minorities like sex workers and the LGBTQ community is lagging.

“We need to be more honest and recognise the needs of all the key populations,” he said.

“We cannot end AIDS by 2030 if we are leaving some of the key populations behind.”

Target to end AIDS by 2030

Zimbabwe, like other UN member states, has committed to ending AIDS by 2030.

Experts believe the target is ambitious and a lack of resources threatens it.

In 1999, Zimbabwe introduced an AIDS levy whereby individuals, companies and trusts are charged 3 percent of income, which is then channelled towards HIV/AIDS programmes.

But experts say that is not enough as the Global Fund, a partnership of international humanitarian agencies mobilising resources to fight HIV, AIDS, tuberculosis and malaria around the world, is supporting drugs and diagnostic equipment while government healthcare focuses on administration.

Funding to Zimbabwe’s health sector fell short of the Abuja Declaration, a commitment made by African leaders at a 2013 summit in Nigeria, which requires at least 15 percent of budgets to be allocated to health. This has resulted in dysfunctional hospitals.

Olive Mutabeni, an executive director at Life Empowerment Support Organization, a female-led activist group, said for Zimbabwe to reach the 2030 target, HIV awareness programmes should continue at the grassroots level.

“Funding should be provided to community-based organisations led by people living with HIV to raise awareness and continue offering support to their members,” she said.

Some people living with HIV and AIDS also suffer non-communicable diseases and they are asked to pay for tests and medication which is beyond the reach of many living in challenging economic conditions.

Mlambo said she struggles to pay for some of the services.

“HIV services are for free, but we pay for treatment for other diseases. I cannot afford it,” she said.

Mwatamawenyu is starting to experience common long-term effects of HIV medication like numbness – but he is grateful to have lived many years.

“Back in 2003, I never thought I would still be around. But here I am, fit and healthy,” he said.