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.  

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.