Dispelling the fear of being HIV positive

What you need to know:

Tanzania has made significant gains in the scale-up of its antiretroviral (ART) programmes, with the number of people on ART steadily increasing since 2010.

Recalling that day back in September 2007, Melania Mrema was sitting in the church, gathering all her courage. She had known for three years that she was HIV-positive, but had kept it to herself. But on that day, everything changed.
She went up to the pulpit and addressed the congregation at the Moravian church in Rungwe district in Mbeya.
She told them about the death of her HIV-positive husband, about how she found out that she was infected too and about her daily medicine that prevents the virus to spread in her body. When Ms Mrema finished saying the words, some people were in tears, fearing that their fellow Christian would die.
Today when Ms Mrema tells this story to Your Health, she is seated in her office at the Moravian church in Rungwe.
“I was fed up of hiding that I had HIV,” the 56-year-old says. “And I wanted to offer help to those who are affected as well.” And indeed, coming forward inspired others to do the same.

Soon after, seven people – including Ms Mrema, initiated the first self-help group of the church. Since then, Ms Mrema has not only become an HIV activist, but also created the HIV department of the Moravian church in Mbeya region, counting on the support of the Protestant charity Mission21, based in Switzerland.
The goal of the program is two-fold: supporting people living with HIV and stopping the spread of the disease in the three districts Rungwe, Kyela and Ileja in and around Mbeya. Despite some progress in the last years, HIV is still widely spread in Tanzania.
According to the recent UNAIDS 2017 data, there are 1.4 million people currently living with HIV, which equals 4.7 per cent of the total adult population. The virus is especially widespread in the south of the country, reaching prevalence rates of 15 per cent.

Encouraging one another
In the course of the last years, six more self-help groups have been created by the church. The biggest and oldest one is the group called ‘Lusubilo’, which means ‘hope’ in the local language Nyakyusa.
That day when Your Health visited the group in Rungwe, 30 of the 65 HIV positive members convened in a modest concrete building. On a small wooden table, a white candle marked with a cross is burning.
The participants are lined up along the wall, sitting on small wooden benches. “The aim of our group is to sensitise other HIV-positive people to be as open as us,” the acting chairman Frank Lwaga speaks.
To promote this idea, the group would go to funerals or churches. “And when we go there we don’t stay silent, but we sing,” Mr Lwaga says. The group stands up, lining up in rows and starts performing their signature song in the local language Nyakyusa.
The main idea of the song is that a person with HIV doesn’t suffer from a disease, but simply has a weak immune system. “By this we want to dispel the fear of being HIV-positive,” Mr Lwaga says.
He goes on to say that the discovery of the antiretroviral therapy [combination of antiretroviral (ARV) drugs to maximally suppress the HIV virus and stop the progression of HIV disease] and the covering of the costs by the government, enabled HIV-positive people a life without major health problems. He also stresses the importance of the group in caring for each other. “Since we are not alone anymore with the virus, we are not afraid of it anymore.”

Meanwhile, in Kyela district
At another group meeting, this time in Kyela district, it becomes clear that a lot of people still struggle to talk openly about their infection. It is the smallest and latest group, having been built only in February this year. Ten members are present, nine women and one man. This uneven representation of sexes is common. Men are still reluctant to be open about their infection, Ms Mrema says. When asked in the group why there are so many women in the group, the answer is unequivocal. “Most infected men want to carry on having sex with multiple partners,”one woman says. Another woman nods. “For us the health of our family is paramount, that’s why we act more responsible than men,” she says.
Everybody in the room knows people in the community who are HIV-positive, but hide it. It is obvious that they are afraid of losing sexual appeal, if they were to be open about it.
Though some of the members were targets of stigma, they confess that the community with being more aware of the disease and the better understanding have now embraced people with HIV positive as part of them. “There is no discrimination anymore,” a woman who has been living with HIV/Aids for 15 years says. She feels perfectly accepted, while in former times she was called “dead person” in the street. Another woman recalls a funeral where everybody ate from the same big plate while she was given a separate meal. It also happened that other people left the room when she entered. Ms Mrema says people are much better educated about HIV today than in the past. Since they know that the disease can only be transmitted by specific body fluids like blood or semen, they are stress-free when they meet people with HIV.
To further encourage openness, the church pays every participant of a self-help group a basic health insurance of Sh10,000. They also help them to generate income by establishing Village Community Banks, a cooperative that enables the members to save money and take out loans when they need it.

The innocent ones
Not every HIV-positive person has contracted the virus in the course of the life. Every year about 10000 babies in Tanzania are born with it. That’s why the church has a special program addressing children. Two of the beneficiaries is the four-year-old Aziza and her grandmother Grace Sunkusa from Rungwe. Aziza had often been sick after her birth. Nobody quite knew why. Then when her mother died, they tested her blood for HIV – and the test turned out positive. Since Aziza takes antiretroviral medicine, her health clearly improved. What remains is the daily struggle for food. Ms Sunkusa is a widow and too old to work, her children don’t have jobs either. “I sometimes struggle to buy even salt or sugar,” she says. It is her main worry that Aziza won’t get enough food to develop properly, given his weak immune system. Thanks to the church, she can afford the transportation to the hospital to get the antiretroviral medicine once a month. When Aziza gets older, the church will also pay for the school material.
In need of support are also Grina Kapalila and Aniyimike Misasi in Rungwe. Their daughter was only thirteen years old when she became pregnant. One year after she gave birth to little Arun, she left. It was only after her getaway, when the grandparents found out, why Arun had often been sick. He was HIV-positive. As Ms Sunkusa, they are struggling to make a living in general, and on top of that, Arun needs special care.
Before the Moravian church stepped in, Mr Kapalila walked for four hours every month to the hospital and back again to get his antiretroviral medicine. Asked for the future of her two-year-old grandson, she just shrugs her shoulders. “I don’t think about the future,” she says. “I just hope he finds his way in life.”