Living for a purpose with HIV, Aids

With a small body and curious young face, Margaret Masiyano stands out. You would be surprised to learn that she is 32 years old, married with two children and that she is HIV positive.

Masiyano says she found out her status in 2002 after undergoing HIV tests following her pregnancy. By then, she was already married.

 “I was devastated when I first heard of my status. There were many questions in my head, but I could not find answers since I remained faithful in the family,” she says, adding, “I remembered that I was down with malaria in 2000 and a relative donated blood to me. To this day, I do not know how I got HIV but I am content with my life. Last year, I gave birth to a baby girl who was HIV negative but she passed on. The pain is behind me now because I want to offer help to others who are in my situation.”

Presently, Masiyano and her friends are just housewives. Neither do they have enough earnings nor any income generating activity to support HIV and Aids patients in their community. It was in 2008 when they decided to come together under Mai Aisha Sister and Youth Aids Programme (Masyap).

Masyap coordinator Mariam Ali Khan told the National Aids Commission [NAC] team recently that Masyap was formed as a response to the silence on HIV and Aids in the Muslim community.

“We had been silent for too long and could act no more as if the pandemic had hit everyone – the whole country is affected. Despite being from a mother body that is Islam-based, Masyap is not limited to Muslims because HIV and Aids is affecting everyone without regard of faith,” Khan explains.

Such challenges mean there is no sweet without sweat. Women in the group have passion to help, but they bemoan limited resources and funding they have.

Masiyano says: “We used to cultivate sand in Mudi River as a way of raising funds to help HIV, Aids patients but there is no more sand in the river. Now, we take the little money we have, sometimes as little as K20, to buy food, clothes and soap for the patients.”

“Sometimes, we put ourselves at risk because we do not have equipment to help. For instance, we wear plastic bags when bathing patients instead of gloves,” she says.

Problems encountered by Masiyano speak volumes of how other women are affected by HIV and Aids.

One of the leaders of the support group Hawa Saidi explains that many of those with HIV and Aids in the community do not want to adhere to Anti-retroviral drugs because of beliefs that the support group has a hard time trying to ‘untangle’.

Hawa reveals that many HIV patients in the society have taken up to eating coarse maize flour [mgaiwa] as a cure for Aids. The team from NAC was shocked to hear this, something that prompted chairperson of the NAC team, Kumbweza Banda to ask for clarification on whether patients eat raw mgaiwa as a supplement to ARVs or the flour ‘taken over’ ARVs.

“Some patients have stopped taking ARVs completely. There was a woman who was under my care and was on ARVs, but her friends cheated her into taking mgaiwa… She is no more. What pains me the most is that this woman could have been alive if she had adhered to the drugs but she became very stubborn and could not listen to my advice. Despite her death, some patients who are eating mgaiwa did not learn that this misconception will kill them,” Hawa narrates among ululations and chanting from her colleagues.

Mara Kumbweza Banda looks happy with the support group. She says it is hard for women to come out in the open and reveal their HIV status.

 “I will leave for Lilongwe a very happy person. It is rare to find people of the same faith coming together to fight HIV and Aids. During the annual review conference that will take place on September 25, I will share my experiences of your group to my colleagues,” said Banda.

Masiyano may have been found with HIV, but her joy as she sings with her colleagues and friends while escorting the NAC team, defines her as a strong woman. The pain of losing her child and not knowing of how she got infected does not reflect on her actions. She chose to live as an example and pillar to those who are now in her shoes.