Stories

Amina is a peer educator trained by Family Planning Association of Malawi’s (FPAM) Linkages project. “I am a HIV positive sex worker and a peer educator,” she says. “I have 51 other sex workers in my care, I inform them on testing and treatment, also about STI treatment and condom use. I teach about the disadvantages of sharing ART (anti-retroviral therapy) and encourage them to go for tuberculosis testing if they are coughing.” Another educator called Cecilia adds: “I reached out to 60 female sex workers. We are all friends and they trust me. I refer them to services and we address abuse by the police. They rape us and steal our money but through the project, we can follow up since the project has access to the managers of the police.” Basic sexual health information Her colleague Florence says: “It also helped that the rogue and vagabond law was repealed.” The law was a permanent curfew, giving the police the power to round up, fine or jail anybody who was on the streets after eight o’clock at night. Lucy, also a peer educator, says part of the work is giving basic information. “I teach my friends on HIV and GBV (gender-based violence),” she explains. “And I teach how to use condoms and lubricants and how to persuade clients to use condoms. I also talk about family planning. Many female sex workers do not know they need it.” “The project helped me with condoms and I shared that with others,” says another client of the programme, Angela. “Through the project, I got tested for HIV and treated for STIs. I also encourage pregnant sex workers to go for pre-natal care so that they do not infect their babies. It is the first time that an organisation like FPAM worked with us. We got respected within the community because we are knowledgeable.” In the year the Linkages project ran, 627 female sex workers were supported in getting tested for HIV, the initiation of anti-retroviral treatment and therapy adherence. 2,700 women were referred to services and many more received information. The HIV prevalence rate among female sex workers went down from 77% to 62%. Global Gag Rule effects FPAM’s Linkages project was phased out in 2016 due to the Global Gag Rule. The effects are keenly felt amongst those who benefitted from the project: Amina says: “Many stopped taking medication. Healthcare facilities are not for us. I sing in a church choir, which is important to me. If they find out what I do, they will throw me out.” “My family thinks I work at a filling station at night,” says Lucy. Cecilia adds: “This project has to come back, please bring it back. If not, we will all die early.”

It is 9.00pm in Lilongwe, the capital of Malawi , the fish market is one of the “hotspots” where the Family Planning Association of Malawi’s (FPAM) opens its trailer doors to  sex workers, a “key population” in the fight against HIV. Thoko Mbendera is the Executive Director of FPAM: “Key populations are groups whose needs you have to address if you ever want to bring down HIV prevalence in the general population. Sex workers clearly need help here: the HIV prevalence rate among them is 77% while among the general population it is 10.2%.” The clinic offers STI screening, family planning, HIV testing, tuberculosis (TBC) testing and cervical cancer screening. Outside, peer educators distribute condoms and talk to waiting clients. Thoko Mbendera says: “This group does not (have) access the public health sector, it is simple not an option for women who do not disclose what they do to anyone, so in the Linkages program we reach out to the hot spots at night.” Florence Mushani, is the coordinator of Linkages: “In the project we trained 63 peer educators. They are HIV positive; they approach their colleagues with information and advice. Our goal is the 90-90-90 target meaning 90% of sex workers know their status, 90% of HIV positive women are on anti-retroviral treatment (ART), and 90% of the women on ARTs will be virally suppressed. We also trained 21 peer navigators; they support others to adhere to therapy. We pay them a small stipend of 25 dollars a month, we expect a lot of them.” Tusekele Mwakasungula is FPAM’s Programs Manager: “The goal of the peer educators training is to build up the person,” he says. And it shows: these women are no shy victims of an unjust society, they are self-confident and outspoken, determined to improve the situation of female sex workers.” FPAM’s Linkages project was phased out in 2016 due to the Global Gag Rule.

Antonio Junior Xiranza is 12 years old. He lives with his Aunt Talita Agosto Mujovo, 39, and her three children in Maputo, Mozambique, after his parents both died from HIV-related illnesses. Antonio is HIV positive, something that Talita was able to reveal to him over the course of nine counselling sessions through IPPF Member Association AMODEFA’s Ntyiso programme. When Antonio was sent to Talita in 2015 he had no understanding of his illness. He was severely underweight and wouldn’t take his medication. “I didn’t think he was going to make it,” says Talita. But following AMODEFA’s intervention last year Antonio’s health has improved rapidly and is gaining weight. This is in large part because Antonio, though still young, has chosen to take on the responsibility for managing his illness himself.  “He takes his medication without being told”, says Talita. “If he’s injured he knows the other children can’t touch his wound.” Antonio is still small for his age but says he feels stronger. He is well enough now to attend school regularly and is already thinking about the future; when he grows up he wants to be a fireman.“I am happy about life here,” he says, shyly. Talita says she is “relieved” to see these changes in Antonio. “At first I was not going to say anything. I would have waited until he was 18 to tell him,” Talita says, which would have continued to put pressure on the entire family. “But with the help of the counselling I had through Ntyiso I was able to tell him now.” While Ntyiso was intended to help parents speak more openly about HIV with their children, it has given Talita the confidence to discuss the illness more widely. “I was able to tell my father, who was sick and had a wound, that he should get tested for HIV,” she says. Her father was diagnosed positive and is now in treatment. “Before I wouldn’t have advised people to take the test, I would have just kept quiet,” she says. Read more about AMODEFA's tireless work in Mozambique

Albertina Machaieie has been working with HIV patients for Amodefa for 38 years and is their longest serving nurse. “I’m going to work forever,” she says. “I like helping people, that’s why I do this job.” Albertina heads up Amodefa’s home care programme which provides medical, nutritional and emotional support to HIV positive patients living in the poorest suburbs of Maputo, the capital of Mozambique. She has seen a dramatic change in attitudes to HIV in the 19 years she has been running the service. In the past she had to hide her car and would visit her patients anonymously. “People feared HIV so they feared me coming to them,” she says.Now people welcome her into the community as a friend and will direct new patients to her. “They call us ‘Muhanyisse’”, which means saviour in the local language Shangaan, she says. Albertina and another nurse work with a large team of volunteers, or ‘activistas’, most of whom are also HIV positive. As well as delivering medication and food to patients and performing health examinations, an important part of Amodefa’s work is continuing to change attitudes towards HIV. “The homecare project encompasses everything,” she says. “It’s not just treatment for illness, we also work with the mind – people need to change their mindset.” She and the activistas give lectures in the community to raise awareness of HIV, and also offer counselling to patients, many of whom find it difficult to accept their HIV positive status. “Husbands and wives stop understanding each other when one is living in denial of HIV,” says Albertina. “They blame the illness on witchcraft.” In other cases, those carrying the virus are scared to tell their families for fear of being rejected. “There are many stories of family members, particularly of wives, who have found they are HIV positive and partners have threatened to leave,” she says. “But when Amodefa has stepped in and advocated, the husband has stayed.” This holistic approach to its homecare has been so effective that medical and psychology students have come from Brazil, the US and Mexico to Mozambique to study the programme and to learn from Albertina’s experience. “I am the library for Amodefa,” she jokes. Over the course of her career Albertina has worked with many challenging cases – particularly men. “Women are more open to treatment because they want to get better so they can care for their children,” she says, “but men often won’t seek help until their health has severely deteriorated.” She recalls one case where a woman tested positive for HIV while she was pregnant. She told her husband to get tested but he refused, and he also prevented his wife from taking any treatment. As a result her baby was born HIV positive - as were her second and third born. “With her last child she started taking the treatment without her husband’s knowledge and the baby was born without HIV,” says Albertina. “This man now says, ‘People, you need to be open – I have three positive children and it is my fault because I would not accept the truth.’” “Children who are HIV positive and don’t know often abandon their medication because they are tired of taking the drugs,” says Albertina. “Ntyiso teaches the importance of taking the medicine. When they are aware of their status, they start taking the medicine normally.” Albertina worked with ten families during the pilot phase of the programme. “Already I have seen great changes in the children, it shows why this project of revelation is so important.” The Ntiyso is a pilot project implemented in Maputo City and it has its focus on disclosure of the HIV + status to adolescents. It targets mothers, parents and caregivers of adolescents. The main activities are: Education and training of Mothers, Parents and caregivers of adolescents to reveal HIV+ status to their adolescents. Due to the Global Gag Rule this project lost its funding and was forced to close.

Palmira Enoque Tembe, 54, is HIV positive She lives with two sons, who are also HIV positive, and four grandchildren in a small house in Bairro Feiroviaro on the outskirts of Maputo. Three times a week she is visited by Amodefa volunteers and once a week by a nurse who provide medication, food and therapy to the family. “Amodefa counsels me through the difficulties in life,” Palmira says. Palmira found out she had HIV when her youngest child was nine months old. He was diagnosed as HIV positive. Palmira asked her husband to get tested too,“He refused” says Palmira. “He said I was possessed by evil spirits and was trying to kill him and my son". Her husband abandoned the family and Palmira was left to battle the illness and raise the children on her own. “I was terrified. I lost hope. I didn’t want to do anything, just sit in my room and cry,” she says. Now, however, the nutritious food, medication and regular medical check-ups she receives as part of the homecare programme have given her a new lease on life. “I’m fine and I am making plans for the future. I know now to get ill is not to die,” says Palmira, who has started to subsistence farm again. At first she was wary of the service. “It seemed like an advertisement for having HIV and I didn’t want my neighbours to isolate me,” she says. “But now I depend on it.” It was through Amodefa’s new pilot counselling project, ‘Ntyiso’ - which translates as ‘The Truth’ in the local language, Shangaan - Palmira was finally able to open up to her son that he had HIV too. While he had always suspected he was carrying the virus, he needed to hear it from his mother for it to become real.“It has changed by life,” she says. “It has improved our relationship because I no longer feel ashamed.” The Ntiyso is a pilot project implemented in Maputo City and it has its focus on disclosure of the HIV + status to adolescents. It targets mothers, parents and caregivers of adolescents. The main activities are: Education and training of Mothers, Parents and caregivers of adolescents to reveal HIV+ status to their adolescents. Due to the Global Gag Rule this project lost its funding and was forced to close. Read more about AMODEFA's tireless work in Mozambique