Stories

“You work with people who have HIV? Why?” That was the question Dr. Gregory Boyce was asked by the young intern that stood before him. He had come to the hospital ward to visit a client who was known to be living with HIV. He approached the intern at the desk and gave his name and designation. The intern looked at him, confused and somewhat amused and asked the question that he has neither forgotten, nor understood to this day.   However, this young intern’s question comes from a mindset that Dr. Boyce is working fervently to change. As Deputy Director of the Medical Research Foundation of Trinidad and Tobago (MRF), Dr. Boyce provides clinical and administrative support to a team of doctors and nurses providing care to their clients who are living with HIV. Due to MRF’s long-standing work in HIV research and healthcare, the Family Planning Association of Trinidad and Tobago (FPATT), has referred many clients to Dr. Boyce and his team, and especially clients from the LGBTI+ community.   Providing specialist care and support  “Persons coming to us from key populations, have very layered needs. They are facing unique challenges in addition to living with the virus. There is still that myth that being HIV positive means that you will positively die. Added to that, there’s the discrimination that the community faces in every aspect of their lives on a daily basis. As a staff, we’ve had to seek special training to guide the way we interact with these clients so that we can meet all their needs appropriately and sensitively,” explains Dr. Boyce.   “Apart from medical interventions which are needed to ensure that our clients continue to live healthy lives, we focus heavily on their psychosocial needs. It’s easy to think that because a client is physically healthy that they are also emotionally healthy. We have clients that won’t leave abusive relationships because they think no one else would accept them. We have other clients that are dealing with long-term medication fatigue because they have been taking pills for over 10 years. With that sometimes comes depression and other drug addictions, which is why it’s necessary for us to maintain open and honest relationships to address those accompanying issues.”  Making HIV a non-issue  Dr Boyce has been committed to providing treatment and care to clients living with HIV for over 20 years. He had worked at the Port of Spain General Hospital after graduating, during which time, medicine for persons living with HIV was expensive and out of reach for many. A few years later, through government programmes, medicine became more affordable, and treatment centres were opening up across the island. However, Dr. Boyce realized that the mortality rate had not changed by much. He wondered why people were still dying from a virus when medicine was easily accessible.   “That first conversation – giving a client the news that they’ve tested positive – is very important. We get to show them that HIV is not an impediment. Most times, with the wrong information, they start to draw up a list of things that they can no longer do, like go after a promotion or start a family. Then they go through life shrunken and unrecognizable, not the person they once were. So to answer that intern’s question about why I work with persons living with HIV: I want to make HIV a non-issue,” he states.    Dr. Boyce hopes to see HIV disclosure become as acceptable as other chronic illnesses such as cancer or diabetes, where an entire family would work towards caring for the affected person, instead of alienating them. He also hopes to see more inclusion and tolerance towards persons living with HIV, especially those within the LGBTI+ community.   “Until a gay or transgender person can walk the streets freely and not be jeered at by passers-by, we still have a long way to go. Until they can access treatment at any public facility without fear or judgment, we have a lot of work to do. It would take a lot of education to change the stigma and discrimination but there is absolutely no reason why another person’s life should be miserable because their expression is different to ours.”   He commends the work of FPATT in upholding the sexual and reproductive health and rights of the LGBTI+ community, through ensuring that they have a safe and non-judgmental environment for treatment and care. He says that the Medical Research Foundation values the great relationship that the two organizations have had for years, even as FPATT works towards becoming its own full-service antiretroviral treatment site for persons living with HIV.    

Public perceptions, a lack of education, and government policies contribute to the barriers and challenges to achieving equality for all. In a country as diverse as Trinidad and Tobago, this is especially acute for certain key populations, including the LGBTI+ community.  For Brandy Rodriguez, Healthcare Navigator at the Family Planning Association of Trinidad and Tobago (FPATT), the struggle is both real and personal. In 1999, Brandy began her transition to womanhood and since 2006 has been working with FPATT in their HIV programme for the LGBTI+ community.    “Back in 2004, very little was said about HIV infection, transmission and prevention. In fact, if there was any information, it was misconstrued and meant to stigmatize the LGBTI+ community. I was fairly new to the transgender community, so I made it a mission to research and find out the truths behind HIV and how I could protect myself. I then felt like I had to share what I found with others who were searching as well,” she said.  Overcoming prejudice and stigma   That’s when FPATT asked Brandy to join their team in educating the LGBTI+ community on the types of healthcare available. Stigma surrounding the community forced many to stay hidden and avoid seeking care. Even if a member of the LGBTI+ community wanted to test for their HIV status, they would never dare to go into a public health centre, because of the fear of being judged by the healthcare professionals.    “It’s a simple case of this. When a transgender or non-binary person walks into a health centre or hospital, and the triage nurse has to fill in a form that asks for gender, the only two options there are male and female. So usually, the non-binary person knows that if they want to access that healthcare, free of judgement, they would have to dress as the gender that would bring less attention. At the end of the day, the healthcare provider does not receive accurate information about the client, and the client doesn’t receive the scope of assessment and treatment that may be necessary. So part of what I do, is to simply accompany the client to the appointment so that it’s a less stressful experience and they don’t feel like they are alone,” says Brandy.   The importance of access to HIV treatment and care Apart from a great lack of healthcare professionals that are willing to treat the LGBTI+ community non-judgementally, the community also lacks social support. Most of the members of the community face barriers to housing and employment, which often means earning a livelihood through sex work. Over 95% of skilled and employable persons within the LGBTI+ community have turned to sex work because they are constantly denied employment within other industries.   “When I began my transition, I was fortunate to have the support of my family; they understood my heart and my need to be my authentic self. Not everyone has that support and so some either migrate or are left homeless because of the fact. Having to work within the sex industry means that they are now at greater risk for HIV or other STIs. My job as an Educator and Navigator is to promote condom use and ensure that they make use of FPATT’s regular HIV testing. If they do test positive, we then have that conversation about U=U, which means that if they [their HIV viral load] are undetectable, they will be untransferable, and then get them to that place of undetectability.”    Brandy explains that being undetectable means that the client’s viral load is suppressed, and they are living healthy lives. The team works hard to ensure clients living with HIV enrol in the FPATT Programme, which supports the importance of adhering to consistent treatment, healthy eating, and rest. As well as testing, the Programme offers sexual and reproductive health education on prevention against STIs and both group and one-to-one sessions to anyone who needs it.  Advocating for support  FPATT has, for many years, advocated for the sexual and reproductive rights of the LGBTI+ community, ensuring that it remains a safe place for HIV testing and counselling. It holds a vision of a world where gender or sexuality are no longer a source of inequality or stigma.   FPATT is poised to become a full-service HIV treatment site, offering antiretroviral treatment as well as psychosocial services for persons affected by HIV. FPATT’s goal is to stop discrimination and stigma against persons living with HIV and ultimately end the spread of HIV within Trinidad and Tobago by 2030.       October 28, 2021 - We celebrate our much beloved colleague Brandy, LGBTQI+ Healthcare Navigator for FPATT and Trinidadian champion of human rights. She has long been a defender of the rights of LGBTQI+ people, and a pioneer in ensuring access to services while fighting stigma and discrimination in the community. We honor her dedication to equality across the Caribbean, her passionate advocacy for Trans rights. The fight continues in her powerful memory.   Conmemoramos a nuestra querida colega Brandy, defensora por la salud LGBTQI+ para FPATT, y referente en Trinidad y Tobago por de los derechos humanos. Ha sido durante mucho tiempo una defensora de los derechos de las personas LGBTQI+, y una pionera en garantizar el acceso a los servicios de salud, al tiempo que luchaba contra el estigma y la discriminación en la comunidad. Honramos su dedicación a la igualdad en todo el Caribe y su apasionada defensa de los derechos de las personas trans. La lucha continúa en su memoria.  

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