Caribbean

Ingrid Bretón learned that she was living with HIV when she was 19 years old. It was 1994 and HIV treatment was not yet available in the Dominican Republic.

“I lasted almost five years alive, but dead inside,” she remembers. “I went through every denial process that a newly diagnosed person goes through. Health centres did not want to assist me. I lived every kind of stigma and discrimination.”

In her town, La Romana, she was known as “the AIDS girl”.  It was impossible to find work.  

HIV treatment helped changed the trajectory of her life. With the guidance of her doctor, José Román, she became the first woman living with HIV in La Romana known to have given birth to an HIV-free baby. As she continued treatment it occurred to her that she was perfectly healthy and could live a more meaningful life.

“I thought to myself, “I am not getting sick, my hair is not falling off, I do not have sores, I do not have AIDS. I want to do things,”” Ms Bretón remembers.

In 2002 she formed the Paloma Group Foundation (La Fundación Grupo Paloma), which provides psychosocial support, legal assistance and job opportunities for people living with and affected by HIV in the eastern region of the country. The organization also plays a key advocacy role, bringing visibility to issues such as treatment adherence, prevention and stigma and discrimination.

One of the foundation’s innovations is an agriculture project that employs people living with HIV.

“It’s a beautiful process,” Ms Bretón says while walking through the sunny, red earth fields, past tomatoes, papayas and bananas. “The idea is that people living with HIV are able to move forward, working and providing for their families.”

The families with whom the Paloma Group Foundation works have been directly affected by the COVID-19 pandemic. The work of the foundation has been critical during this time. Its volunteers do home deliveries of food, medicine and clothing. The foundation is a source of connection and emotional support at a time when communities living with HIV are more isolated than ever due to social distancing measures.

The first Rapid Survey on the Needs of People Living with HIV in the Dominican Republic in the context of COVID-19 found that while 92% of respondents received their antiretroviral therapy, roughly one in six had less than one month’s supply left. Thanks to the advocacy of the UNAIDS Country Office for the Dominican Republic, protocols have now been amended so that people living with HIV and accessing treatment through the public health system can receive a three- to six-month supply of their medicine at one time.

The country office has urged the government to strengthen comprehensive care programmes, including through alliances with civil society. For example, the Paloma Group Foundation provided assistance to people living with HIV at the Francisco Gonzalvo Provincial Hospital during a five-month period in 2020 when medical personnel were not available at the La Romana facility.

The UNAIDS Country Office for the Dominican Republic has also called for particular attention to be given to the social protection and food security needs of people living with HIV who are in economically fragile situations. The office responded quickly to the fallout of COVID-19, offering support to the Paloma Group Foundation and other community organizations contributing to the national HIV response. UNAIDS’ comprehensive response included the provision of personal protective equipment and information specifically for the community of people living with HIV. The second stage of their response included mobilization of nutrition support.

“This was of great value to families given the economic crisis caused by COVID-19,” Ms Bretón says.

“Civil society plays the leading role of bringing awareness to communities and advocating on their behalf,” says the UNAIDS Country Director for the Dominican Republic, Bethania Betances. “As we respond to two pandemics—HIV and COVID-19—is it vital that they are at the decision-making table to help shape an effective, humane response.”

Watch: The extraordinary story of a woman living with HIV in the Dominican Republic

This year, Guyana will roll out a comprehensive plan for pre-exposure prophylaxis (PrEP). The Guyana Minister of Health, Frank Anthony, announced that the national strategy will be implemented in collaboration with clinics across the country and nongovernmental organizations.

“We want to expand to ensure anyone who is at risk for HIV would have access,” Mr Anthony said. “We believe that with a comprehensive programme for PrEP we can prevent many infections.”

This move marks the culmination of years of advocacy and partial PrEP implementation. The existing PrEP policy is a programme for serodiscordant partners only, so couples in which just one person is living with HIV have been able to access PrEP through the public health-care system to avoid transmission to the HIV-negative partner.  

Since 2015, the World Health Organization has recommended that “people at substantial risk of HIV infection” should be offered PrEP. Several countries have prioritized key populations, including gay men and other men who have sex with men, sex workers and transgender people, for PrEP programming. In Guyana, those groups also have higher HIV prevalence: 8% for transgender women, 6% for sex workers and 5% for gay men and other men who have sex with men.

Last year, Guyana’s Society against Sexual Orientation Discrimination (SASOD Guyana) moved from calling for a more inclusive PrEP programme to offering the service itself. The group teamed with the Midway Specialty Care Centre to fill this gap in the country’s HIV prevention response.

“We want combination prevention to take the front burner,” said Joel Simpson, the SASOD Guyana Managing Director. Through this private sector/civil society partnership, for the first time people in Guyana from any population group were able to elect to initiate PrEP. The medicine was sold to clients at cost price and those accessing the service through the nongovernmental organizations paid no consultation fees.  

A 2018 SASOD Guyana assessment of gay men and other men who have sex with men and transgender people supported by the International HIV and AIDS Alliance (now called Frontline AIDS) found that, when sensitized, there was a high level of interest in taking PrEP. However, just around 60% of focus group participants were willing to pay to do so.

“We need politicians and technical people to base decisions on science and research. At times we have encountered a moralistic approach to setting public policy,” Mr Simpson reflected. “It’s not about whether you belong to a particular population group. It’s about responding to reality and lowering risk.”

Guyana’s HIV programme results are among the Caribbean’s best. The country surpassed the 2020 testing target, with 94% of people living with HIV diagnosed in 2019. Seventy-three per cent of people who knew their status were on treatment. Of those, 87% were virally suppressed. Over the past 20 years, new HIV infections have been reduced by half in the South American nation.

“HIV treatment has come a long way, and not just for people living with HIV. To close the gaps and ensure that no one is left behind it is critical that best practices for prevention and treatment are implemented fully,” said Michel de Groulard, UNAIDS Country Director, a.i., for Guyana and Suriname. “This is why we are pleased about the direction the Health Ministry is taking this year to ensure that PrEP is made available to all who need it. We have the tools to end AIDS. Now we must use them.”

Imagine using a health-care system that has no concept of you as a person, or of your unique needs. Nurses might not ask important questions. Doctors might overlook the solutions you really require. You might feel unwelcome.

That has always been the reality for transgender people in Jamaica. A new strategy seeks to change this.

With support from UNAIDS and the United Nations Population Fund (UNFPA), TransWave Jamaica has launched the Trans and Gender Non-Conforming National Health Strategy, the first of its kind in the English-speaking Caribbean. The five-year plan is a rights-based road map for how the health and well-being of transgender people can be advanced. It moves beyond recommendations for the health-care system to the structural and societal changes necessary to achieve equitable access to services and opportunities for the transgender community.

“Too many transgender people stay home and suffer or change who they are to access public health-care spaces,” explained TransWave Associate Director of Policy and Advocacy, Renae Green. “We need improvement to basic services, including psychosocial support. And we need transgender people to be able to access public health services as their authentic selves.”

Through the Unified Budget, Results and Accountability Framework Country Envelope for Jamaica, UNAIDS collaborated with UNFPA to support a robust year-long process of research, community engagement and strategy development, including a monitoring and evaluation framework. The strategy development process was informed by a multisectorial steering committee composed of civil society organizations, international cooperation partners and government authorities.

HIV is a major priority for the Jamaica transgender community. Around 50% of transgender women participants in two recent studies were living with HIV. But there are other pressing concerns. Two surveys found that around half of transgender respondents were unemployed. One third skip meals. One in ten sells sex to survive. Research conducted in 2020 by TransWave found that half of respondents had been physically assaulted in the past year, with 20% reporting sexual assault. More than 80% had been verbally abused.

“The needs go beyond HIV and health care. Other factors affect people’s ability to be safe, to be adherent or to remain HIV-negative. We should take into account the whole person, not just a part,” said Denise Chevannes-Vogel, HIV and AIDS Officer for the UNFPA Sub-Regional Office for the Caribbean.

“We value the fact that we were able to bring together the community to have a discussion about their needs beyond HIV,” said Ms Green.

The TransWave team led the community needs assessment. Some community requests, such as hormone replacement therapy or gender assignment surgery, are unique. But others are common to all people. They want access to health care and housing, education and employment. And they want to see themselves represented in the civil society spaces where many access care and support.

“We will not reach any AIDS-related targets if we do not prioritize transgender health as a whole. People are dying because of violence, living on the streets, lack of jobs and lack of opportunities. Even the HIV prevention knowledge that most people would acquire through formal education settings is not available to transgender people when they are bullied and forced to drop out. So this process was about reflecting on the impact indicators. What would it take for them to live longer, better lives?” said Ruben Pages, UNAIDS Jamaica’s Community Mobilization Adviser.

But what chance does this comprehensive and forward-thinking strategy have of succeeding in a country famed for its social conservatism? The partners are optimistic. On one hand, the approach calls for longer-term goals, including law reform around issues such as gender identity recognition and decriminalizing sex between same-sex partners. But the strategy is also a practical guide for transgender inclusion in systems and frameworks that are already in place. With targeted action there can be quick wins.

Manoela Manova, the UNAIDS Country Director for Jamaica, said the strategy will help the country accelerate progress to end AIDS.

“Going forward, there will be renewed focus on ensuring that excellent prevention, testing and treatment outcomes are achieved across all communities, especially key and vulnerable populations,” Ms Manova said. “This is an opportunity to make good on our commitment to leave no one behind.”

Haiti’s first safe house for transgender people opened last week. Kay Trans Ayiti launched with the snip of a red ribbon and cheers from a circle of activists and residents. The group took turns taking pictures between bobbing pink and blue balloons tied to the veranda.

The triumphant moment came during a tough time. Asked how transgender people have fared in Haiti during COVID-19, home founder Yaisah Val was emphatic. “When the rest of the population has a cold, the trans community has pneumonia. Just imagine that with the hunger, poverty and meagre resources in Haiti, we are always on the outside,” she says.

In many ways, Ms Val is not as shut out as the people she serves. Haiti’s first publicly open transgender woman introduces herself as a mother of two and a wife. She has a degree in education and clinical psychology. She was a teacher and school counsellor before becoming a full-time community mobilizer, activist and gender identity spokesperson. During what she calls her stealth years, she was easily accepted as a woman.

Born in the United States of America to Haitian parents, she has had the benefit of a stable home, supportive teachers and a wildly loving grandmother.

“If you are going to be a sissy you will be the best sissy there is because you are mine,” her granny told her when she was a boy named Junior.

This is an anomaly. According to the United Caribbean Trans Network, transgender people in the region are far less likely to be supported by family, complete their secondary education and be employed. They are more likely to be homeless, to sell sex to survive and to face extreme violence. All this sharply increases the community’s HIV risk. A recent study found that transgender women in Haiti had an HIV prevalence of 27.6%—14 times higher than the general population.

But notwithstanding her “privileged” life, Ms Val’s 47-year journey has been fraught.

From when she was two or three years old she knew she was a girl. The gender policing from relatives was immediate and incessant: “Straighten up that boy. You can’t let him grow up like that.” At seven she was admitted to Washington Children’s Hospital with self-inflicted wounds to her genitals. Puberty was, “hell … a lot of confusion and self-hate.”

About 20 years ago she became herself during the Haitian Carnival. She braided her hair, slipped into a dress and boarded a loud, colourful tap-tap bus with her friends. One man flirted. He called her pretty and opened doors. She felt like Cinderella.

“That boy eventually found out and beat me within an inch of my life,” Ms Val remembers. “Whether you are upper class or middle class or on the streets, as long as you are trans it does not matter. Once you disclose, all respect is gone … you are just this thing. That one word disarms you of all humanity in people’s eyes.”

Transitioning offered a sort of freedom, “I was living and being seen as who I am, who I had always been.” But the fear of being assaulted or excluded made her identity a stressful secret. Old boyfriends did not know she was transgender until she came out years later. She only disclosed to the man who would become her husband after they had lived together for a year and were on the brink of getting married.

“I don’t recommend people do that,” Ms Val says again and again, referring to transgender people hiding their gender identity from romantic partners. “It can be violent. It can be dangerous.”

In her case it worked out. Her partner decided that she was the same person he knew and loved. Three years ago, the story repeated when she disclosed to her children.

“I was just surprised,” her son, Cedrick said. “I was shocked in a good way. They’d slowly started educating me over the years, so I understood what it meant. Ever since then the whole mother/son bond went to a new level for both of us. It filled in all those gaps. Now everything made sense, like her childhood stories.”

Coming out to those closest to her has opened the floodgates to activism. In 2016, Ms Val became the first person in Haiti’s history to publicly identify as a transgender person. She has been a key partner for UNAIDS Haiti and the island’s lesbian, gay, bisexual, transgender and intersex (LGBTI) people organizations. Last year she participated in a national dialogue on LGBTI rights. Together with her husband she started taking in homeless transgender people. That paved the way for Kay Trans Ayiti, which now houses 10 transgender people. Fundraising is under way for a programme of psychosocial support, hormonal replacement legal advice and job training. One of their employment initiatives is a food cart. Some of their residents are living with HIV. They are supported to remain adherent to their antiretroviral treatment.

Ms Val knows first-hand how terrifying it is to access sexual and reproductive health care as a transgender woman. She recalls the experience of going to a gynaecologist in Haiti to get a check-up related to her vaginoplasty. The doctor did not understand what “transgender” meant. That visit ended with the gynaecologist calling other doctors to gawk.

“I was a YouTube channel, a Google page … anything but a human being. I was upset. I was crying. This is why transgender people do not access health care! We have a lot of transmen with gynaecological issues who make herbal treatments rather than go to the doctor,” Ms Val says.

Her group, Community Action for the Integration of Vulnerable Women in Haiti (Action Communautaire pour l’integration des Femmes Vulnerable en Haiti, or ACIFVH), is working with two HIV clinics to sensitize health-care providers. Combatting the ignorance and conservatism is a tall task. Even after educational sessions some doctors and nurses have tried pushing their religious views on the trainers.  

“I was lucky not to be hindered by transphobia and discrimination,” Ms Val reflects. “Imagine if I did not have a supportive grandmother, an education and opportunities. I would not have been the person you see now.

“If you throw a seed on concrete it is not going to thrive. Being trans is not the problem. It is the reaction people have to it:  throwing them on the streets, not letting them work, not taking them into schools. We need to have a place in society. It is hard. It will take a while. But someone has to start.”

A woman living with HIV is at the Centre for HIV Research and Education Services (CHARES) in Kingston, Jamaica. She normally gets a three-month allotment of her antiretroviral medicines. But not this time. The doctor warns her that, since April, state pharmacies have only been dispensing a one-month supply.

About a 20-minute drive away at the Comprehensive Health Clinic, a client waits for his name to be called. He doesn’t use one of the wooden benches allocated for sexual health patients. Instead, he finds a nearby seat and listens intently.

HIV service providers in Jamaica have been challenged this year with responding both to new challenges caused by COVID-19 and long-standing service delivery stumbling blocks. The UNAIDS Country Director, Manoela Manova, wanted to get a better understanding of the issues on the ground, so she visited both treatment sites to speak with everyone, from adherence counsellors to doctors.

The University Hospital of the West Indies’ CHARES has been a best practice model for HIV treatment in Jamaica. For the island as a whole, 79% of those on treatment were virally suppressed last year. At CHARES, however, an impressive nine in every 10 clients are virally suppressed and therefore keep healthy and are unable to transmit the virus.

But even for this accomplished programme, COVID-19 has presented significant challenges.

Laboratory support has been diverted toward COVID-19 and there has been a backlog in receiving viral load testing results.

CHARES had been used to writing three-month prescriptions for stable clients, but since COVID-19, state-run pharmacies have been dispensing only a one-month supply. This is part of the government’s strategy to avoid stock-outs given the supply chain challenges at this time, but it means that those on treatment need to go out to get their medicines more often. CHARES has begun home deliveries, particularly for older people, who are more reluctant to venture out given the novel coronavirus risk. 

COVID-19 containment measures have increased the need for mental health support. Income loss, school closures and curfews have placed an added strain on thousands of Jamaican households, including many people living with HIV. But when clients are referred to psychiatric support in the main hospital they rarely go for fear of experiencing discrimination. Further, since the hospital in which CHARES is located is a designated COVID-19 treatment site, some clients have opted to stay away.

“We need closer monitoring and evaluation to address the challenges around patient management at this time,” said CHARES Programme Director Racquel Brown. “Optimally we would like to hire someone with responsibility for analysing patient data to make more strategic decisions around care and treatment.”  

The Comprehensive Health Centre serves a number of people living with HIV alongside those infected with other sexually transmitted infections. Here, too, multimonth dispensing has not been possible during COVID-19. Patients’ need for nutrition support has been high during this period. Some have had their antiretroviral medicines but no food with which to take them.  

But other challenges came before COVID-19. Two out of five clients are lost to follow-up. Patients have given service providers wrong addresses. And the clinic’s viral suppression rate stands at 70%, below the national average. Some come off their treatment against their doctor’s advice.

Ms Manova said many of the challenges at both clinics are linked to self-stigma and discrimination, which is the main issue facing Jamaica’s HIV response. For the country as a whole, just 43% of all people living with HIV were on treatment in 2019 despite the island’s relatively high testing coverage.

“Before and during COVID-19, our results are undermined by shame, fear and prejudice,” she noted. “For an effective public health response, we have to be deliberate and consistent about building trust with communities and combatting all forms of stigma and discrimination that block people from accessing care.”

“It was inspiring and sobering to spend time with these health-care providers,” Ms Manova said. “Jamaica has correctly treated community health-care employees as essential workers. Staff including community facilitators, social workers, adherence counsellors and case managers are just as needed as doctors and nurses. Their work is critical at this time to address the individual needs and emotions that could affect treatment outcomes.”

Rose Clark (not her real name) is a 21-year-old transgender woman living in Kingston, Jamaica. Through sex work she’d been able to afford the basics—food, clothes and a small apartment.

Another transgender woman, Carla John (not her real name), worked in a hotel bar on Jamaica’s north coast. It allowed her to live independently of an unsupportive family since she was 19 years old.

COVID-19 upturned their lives. A night-time curfew made it impossible for Ms Clark to work. She was evicted in May. Ms John’s employer shut down operations in April and sent staff home. Since then she’s been living with hostile relatives.

These two are not alone. The Equality Group—a coalition of civil society organizations serving lesbian, gay, bisexual and transgender (LGBT) people in Jamaica—conducted an online survey to gauge the impact of COVID-19 on the LGBT community. It found that a quarter of respondents had lost their job, while three in 10 were unable to pay for food, rent or utilities.

“There’s been a sharp increase in homelessness,” reported Renae Green, Associate Director of Policy and Advocacy at Transwave. “The community has experienced major loss of income and people are unable to pay for housing, food and other basic amenities.”

The transgender community as a whole has several layers of vulnerability—low access to education and employment, small or non-existent family safety nets and high vulnerability to gender-based violence. These are the underlying causes for a 2018 study finding that half (51%) of transgender women in Jamaica were living with HIV. 

Transwave has collaborated with WE-Change, JFLAG and Equality Youth to run a COVID-19 hotline. It also provided care packages, including non-perishable food items and toiletries, to people in need. Already more than 100 transgender people have benefitted.

Critically, a Trans Emergency Fund was established to raise money to cover or subsidize applicants’ rent for short periods. Both individuals and organizations have made donations. And Transwave manages a virtual support group, providing much needed emotional solidarity during this trying time.

If anything, COVID-19 has intensified Transwave’s ongoing efforts to shine a light on the hidden issues facing one of Jamaica’s most marginalized groups.

“We are not included in decision-making processes,” Ms Green said plainly. “Decision-makers barely talk about us. We keep having to say “remember trans people”.”

UNAIDS Jamaica provided financial support that was used to ensure that Transwave had personal protective equipment and to supplement care package supplies. The office has also made certain that transgender issues are included in the coordinated HIV civil society response to COVID-19.

This fresh pandemic response has unfolded alongside Transwave’s 2020 strategic planning work, which has been supported by UNAIDS and the United Nations Population Fund.

“There is an urgent advocacy agenda for transgender people that includes all the social determinants to health and human rights,” said Manoela Manova, the UNAIDS Country Director for Jamaica.

“COVID-19 has laid bare just how vulnerable people are when they do not have equitable access to opportunities, justice and health care,” added UNAIDS Jamaica’s Community Mobilization Adviser, Ruben Pages. “That’s why it’s so important and inspiring that Transwave has continued its core work through all this.”

The socioeconomic impact of COVID-19 is clear. People have lost incomes. Children are out of school. Food and housing insecurity are on the rise. And there has been an increase in domestic violence.

But for many women living with HIV in Jamaica, there are added layers of stress. According to the Jamaica Community of Positive Women (JCW+), many of their clients reported having received only one month’s supply of HIV treatment, although they were hoping for the recommended three months. New screening protocols at certain clinics have made some people feel exposed to unfamiliar health-care staff and unexpected disclosure of their HIV status. A few women report not having been able to access contraception on time.

According to the Coordinator of JCW+, Olive Edwards, the pressure of dealing with both pandemics has had a huge mental health impact on women living with HIV.

“Uncertainty is taking a toll,” she said. “It has disrupted life and people are worried. Some are struggling to cope with these feelings of constant uncertainty.

JCW+’s main objective for 2020 was to provide community support for women living with HIV in order to improve treatment adherence and reach viral suppression. When COVID-19 hit in March, they were presented with an added challenge. How would they address women’s new needs?

UNAIDS Jamaica’s COVID-19 emergency response contributed hygiene supplies to care packages. JCW+ used these as an entry point for connecting with clients. Women were provided with soap, household disinfectant and bleach and were shown during peer-share sessions how to use those products, along with masks made by a community mobilizer.

From there, the organization linked women to the Positive Health and Dignity Movement and treatment adherence projects. JCW+ participants prepared personal development plans with a focus on treatment adherence, education, job training and certification goals, where necessary. They keep in contact with the care teams in order to ensure access to optimal health and social support services. They have conversations to keep hope alive and send text reminders to reinforce key health and well-being messages.

“Community needs to be engaged at this time. Managing COVID-19 is about physical distance, not social distance. We felt women needed to meet and talk,” Ms Edwards said. They’ve limited support group sessions to eight people at a time.

According to the UNAIDS Country Director for Jamaica, Manoela Manova, the AIDS response must now strike a delicate balance.

“We must address standing health-care and human rights priorities as well as the immediate physical needs triggered by the COVID-19 response,” Ms Manova said.

Going forward, Ms Edwards says JCW+’s advocacy priorities are ensuring that the HIV response is not neglected because of COVID-19 and ensuring the most marginalized people are caught by state social safety nets. 

Ms Edwards asked that UNAIDS continue to “feel the pulse of what is taking place” and support community outreach strategies that are relevant to Jamaican culture.

COVID-19 has brought new challenges for many people living with HIV in Jamaica:

“I am concerned about going to the clinic too often, but I can only get one month’s supply of antiretrovirals at a time.”

“The place I normally go to meet with my community facilitator is no longer available. Now how do I access care?”

“I haven’t been taking my medicines the way I should. Am I going to catch COVID-19?”

For Dane Lewis, Programme Manager of the Jamaica Network of Seropositives (JN+), addressing the community’s anxieties has cleared a path to more connection and support.

“JN+ started doing a survey almost immediately. We reached about 70% of our membership. This was an opportunity to reconnect to our base, to see what the needs were. It helped us to re-establish contact and brought our community closer together,” he said. “Ultimately we think this pandemic will help us bring and keep more people in care.”

There are an estimated 32 000 people living with HIV on the Caribbean island. In 2019, just 44% of them were on antiretroviral therapy, while roughly one third (35%) were virally suppressed. While most people access treatment through the public health-care sector, community organizations like JN+ play a key role in supporting people to start antiretroviral therapy and stay the course.

They’ve also been a critical partner during COVID-19. Despite having a multimonth dispensing policy, the Jamaica Government has authorized just monthly dispensing in order to avoid stock-outs.

“Community organizations like JN+ have allayed fears and followed-up so that people continue their treatment,” said UNAIDS Jamaica Country Director, Manoela Manova. “That’s why it’s important that civil society is at the decision-making table and that community workers are classified as essential workers during COVID-19.”

For the organization’s retention navigators, not much has changed. They continue to reach out to clients via the telephone to check in on whether they are taking their medicines as they should. There has been more of a shift for community facilitators, who were traditionally connected to treatment sites. Face-to-face support has largely given way to telephone calls and video chats. Twice a month, online sessions are used to address wide-ranging community concerns. JN+ team members are on hand to do things like drop off care packages or connect clients affected by community lockdowns to new treatment sites. The organization has also helped people register to receive financial support from the state.

“There has been a lot of anxiety about being able to access basic food and sanitation items. People lost jobs because of the pandemic, so anxieties turned into real needs for many. We had to stop doing in-person activities, such as our support groups, and refocus our energies on coordinating the peers to provide care packages. The support and network we offer have been important,” Mr Lewis explained.

The JN+ COVID-19 experience underlines the key role that community organizations play in helping clients to access resources.

UNAIDS Jamaica has been working to support the response at the practical and tactical levels. It provided hygiene products to be widely distributed and also facilitated weekly collaboration between civil society organizations responding to the needs of people living with HIV during COVID-19.

“Community organizations save lives,” said Ruben Pages, UNAIDS Jamaica’s Community Mobilization Adviser. “The JN+ experience shows why it is important to support community organizations that are able to reach marginalized people with unique support that those in need are not able to find anywhere else.” 

For many Guyanese families, COVID-19 has meant far more than mask-use and movement restrictions.

“The disruptive effect on economic activity means that for some there simply is not enough food,” said Michel de Groulard, UNAIDS Country Director, a.i., for Guyana and Suriname.

But for people living with HIV in Guyana, there’s been no need for a hastily improvised nutrition support solution. For almost 14 years the National AIDS Programme secretariat has invested in the development of a food bank specifically for people living with HIV, including those coinfected with tuberculosis.

The programme started with support from the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) and continues to receive Global Fund contributions. From the start there were consistent, major donations from the National Milling Company of Guyana. Since 2017, the Government of Guyana and the Food for the Poor charitable organization have been the primary donors. Importantly, throughout the years the food bank has attracted significant inputs from the private sector. In 2019, there were more than 20 corporate contributors.

Referrals come from the clinical teams attending to people living with HIV. Food support is granted for an initial six-month period, after which the situation is reassessed. In the interim there is a collaborative effort with the Ministry of Social Protection and the Recruitment and Manpower Agency around job placement and other types of social support.

Rhonda Moore worked as an HIV doctor for six years and in three regions before assuming leadership of the National AIDS Programme. She’s seen the difference nutrition assistance makes for people and families on the brink. When people are worried about whether they will eat, they don’t take their treatment properly.

“Food insecurity creates a vicious cycle,” she said. “For people living with HIV it is important to have a healthy, balanced diet along with treatment to control the disease. But when someone doesn’t have food it affects them both mentally and physically. Adherence becomes an issue and the mental health impact also undermines the immune system.”

In the context of COVID-19, the food bank has expanded its reach to HIV-negative members of key populations. The National AIDS Programme is collaborating with community organizations to pair dissemination with the provision of information on COVID-19 and HIV as well as HIV prevention and testing services.

So far, more than 2700 food and personal hygiene packages have been distributed. Rather than have people journey to the food bank, the supplies are now being distributed through the treatment sites in their districts. An open invitation was issued to diagnosed people who hadn’t started or continued antiretroviral therapy to go to their nearest treatment centres for HIV medicines and food—two essentials for surviving COVID-19.

In 2019, Guyana became the first Caribbean country to introduce national nutrition and HIV guidelines. The strategy supports health-care providers, policymakers, social workers and other HIV response stakeholders in responding to the nutrition care and support needs of people living with HIV in diverse conditions. In an epidemic response often dominated by concerns around treatment, Guyana has been proactive about addressing the food insecurity challenge some people living with HIV face either consistently or—as is the case with COVID-19—in exceptional circumstances.

“HIV treatment will fail if people don’t have food—healthy food. The fact that Guyana has been able to respond immediately to alleviate food security challenges and thus protect the well-being of people living with HIV right from the outset of the humanitarian crisis demonstrates the value of making psychosocial support investments integral to our regular treatment programme,” Mr de Groulard said. “It makes countries and communities more resilient, more agile and better prepared to respond to crises.”

Twinkle Paule, a transgender activist, migrated from Guyana to the United States of America two years ago. As the COVID-19 crisis deepened, she thought of her “sisters” back home and in neighbouring Suriname. For many of them, sex work is the only option for survival.  She knew that the curfew would starve them of an income. And she was worried that some might wind up in trouble with the law if they felt forced to work at night.

After making contact with people on the ground, her concerns were confirmed. She made a personal donation, but knew it was not nearly enough.

“Being somebody who came from those same streets, I knew we had to mobilize to take care of our community. I know about lying down at home and owing a landlord … about getting kicked out because you can’t afford to pay rent,” Ms Paule said.

She collaborated with New York activists Cora Colt and Ceyenne Doroshow, founder of Gays and Lesbians in a Transgender Society (GLITS Inc), to start a GoFundMe campaign. After launching on 12 May they’ve already raised enough money to cover rent subsidies for one month for six transgender sex workers. The money has been forwarded to Guyana Trans United (GTU), the organization for which she worked as a peer educator when in 2015 she left sex work behind.

That she can now use her position of influence to mobilize emergency relief is itself a stunning success. When she migrated, she’d felt herself tottering on the brink of suicide. The emotional weight of exclusion and injustice was bearing down.

One successful asylum claim later, she’s now a full-time communications student at the Borough of Manhattan Community College. She completed her high-school education last year—something she hadn’t been able to do in Guyana. While studying she worked as an outreach officer for GMHC (Gay Men’s Health Crisis).

She seamlessly slipped into advocacy mode, addressing the city council last year about repealing New York State Penal Law § 240.37, a loitering law that is used to target transgender women. She immediately recognized that this was from the same tradition as the vagrancy laws she’d first been victimized by, and later fought against, in Guyana.

Ms Paule is acutely aware of how much her life prospects have changed due to migration.

“It just shows the difference it makes if somebody is given opportunities and the right tools to make other decisions in life. It showed me what I was lacking was adequate resources and the ability to go into an environment without having to worry about discrimination and violence. I am not saying everything is perfect here, but I don’t face the same level of injustice on a daily basis. I was able to access hormone therapy. And to me the most important thing,” she reflected, “is that I was able to go back to school.”

Her mother died when she was a child. Her father moved on with a new family. She was left in the care of his relatives. There wasn’t always enough money for her education. Some weekends she cleaned a church to earn some cash.

But poverty wasn’t the only challenge. Since she was very small she remembered feeling different. She did not have a label for what she felt, but instinctively knew it would not be accepted. At school she strained to stay under the radar. One day her heart skipped when a classmate said she sounded like an “antiman”—a Guyanese derogatory term for a gay person.

Over the years she repeatedly overheard adults in the household agreeing that she should be put out if she turned out to be gay. At 16 years old it happened. A relative spotted her “dancing like a girl” at a party. Now she was homeless.

Ms Paule sought refuge with other transgender women and, like them, used sex work to survive. The burgeoning regional movement to address the needs of vulnerable and marginalized communities had an impact on her life. From the newly formed Guyana Sex Work Coalition she learned about safer sex and accessed safer sex commodities. When some of her peers started going to conferences they found out for the first time that there was a word for their experience. They weren’t “antimen”. They were transgender.

But life on the street was brutal. If someone was robbed or raped they could not report the crime.

“The police tell you plain, “Why are you coming here when you know prostitution and buggery are against the law?”,” she remembered.

She said sometimes rogue police officers threatened to charge them and extort money from them.

Once the police locked up her and other transgender women together with men at the police station and threw condoms into the cell—a green light to the other detainees. She was a teenager at the time.

She accompanied a friend to the police station to make a domestic violence report one day. Instead a policeman told her, “You are involved in buggery. I am locking you up.”

In 2014, a group of them were arrested for sex work in Suriname. Among other indignities, a prison guard forced them to disrobe and squat outside their cell, in the presence of other detainees.

Seven years ago, one of her friends was killed, her body was thrown behind a church. There was no investigation.

Trauma after trauma. It takes its toll.

Even when nothing happens, there is lingering fear. Will I be put out the taxi? Will people insult me on the street? Will I be mistreated because of what I’m wearing?

“The girls take it like it’s their fault,” Ms Paule reflected. “Even in my personal experience I felt people had a right to do me things because I was not behaving in accordance with societal norms.”

Even as she stepped into advocacy, she didn’t feel whole. She attempted suicide once and began having a drink or smoke before turning up to work. Two years ago she was unravelling. Now she’s rallying forces in the service of her community.

Ms Paule credits the work of organizations like the Society against Sexual Orientation Discrimination and GTU for advancing the dialogue around inclusion in Guyana.

“What is still missing is safety and equity for the community,” she insisted. “We need a state response to say, “These people should be taken care of”. The trans community has no jobs, we are bullied out of school, we suffer police brutality. These things are wrong. We need more robust action from our elected officials.”