The transgender community has been severely affected by the COVID-19 pandemic in Asia and the Pacific. “My main worry is about survival and being able to support and cover the essential needs of the transgender community when job security is less and businesses are closing,” said Khartini Slamah, a transgender woman and activist from Sarawak, Malaysia, who is also known as Mama Tini in her community. “Many transgender people are unable to pay rent and utility bills, unable to do sex work, conduct their usual businesses. Some even lost their jobs,” she said.

Mama Tini’s testimony is featured in the COVID-19 Effect Series, a regular newsletter that profiles issues, challenges and solutions from the lesbian, gay, bisexual, transgender and intersex (LGBTI) communities, key populations and people living with HIV across Asia and the Pacific, created by APCOM, a regional network for LGBTI people based in Bangkok, Thailand. Since April 2020, with more than 19 issues, the newsletter has provided a platform to leverage the voices of people living with HIV and LGBTI people and to share stories, highlight challenges, showcase innovation and build strength within these communities.

The articles included in the newsletter show how civil society organizations are playing a critical role in providing essential safety nets for vulnerable communities during the pandemic. Since the first COVID-19 outbreak in Malaysia, Mama Tini has been working closely to provide support to transgender women, gay men and other men who have sex with men and female sex workers to encourage sexual health screening and testing and to raise awareness of HIV and other sexually transmitted infections.

The newsletter is also a testament to how community-led organizations have used the structure and networks from the HIV response to ensure timely access to information about COVID-19 while preventing disruption to HIV services. Examples of these initiatives include how community-led HIV services provide antiretroviral therapy, HIV testing and pre-exposure prophylaxis (PrEP) to key populations and fundraising efforts for food packages.

CARMAH, a partner in Viet Nam, has been implementing the TestSGN initiative to encourage HIV testing in Ho Chi Minh City for several years. Since the beginning of the pandemic, CARMAH has provided PrEP to 450 gay men and other men who have sex with men and transgender people in Ho Chi Minh City. During the COVID-19 outbreak, the organization implemented more flexible working schedules to ensure that PrEP and HIV testing services were not disrupted.

“The COVID-19 Effect Series documents the important work carried by our community partners and individuals in the response to COVID-19. The series captures inspiring stories from the grass-roots level on overcoming challenges, sharing best practices and how we are all working tirelessly to ensure access to HIV prevention and treatment services and the protection of LGBTI rights,” said Midnight Poonkasetwattana, the Executive Director of APCOM

The COVID-19 Effect Series also captures the unique voices of outreach workers. One of them is Deepak Tripathi, a Senior Programme Officer at the Committed Communities Development Trust (CCDT), an organization based in Mumbai, India. He has a background in and passion for documentary movies, story-telling and news anchoring, but now works full time at CCDT. Throughout the pandemic, Mr Tripathi has been committed to helping the communities hit hard by the economic fall-out from COVID-19.

“Most nongovernment organizations in India, including CCDT, play a crucial role in continuing improving the health and well-being of their target population or beneficiaries, especially during natural crises or disasters, including the COVID-19 crisis,” said Mr Tripathi. CCDT held fundraising events to support migrant workers and daily-wage communities, donated medical equipment and 3000 personal protective equipment kits to hospitals in Mumbai and supplied nutrition kits or bags to 500 individuals and the families of people living with and affected by HIV.

APCOM has also used the COVID-19 Effect Series to promote fundraising initiatives, such as #CoronaAPCOMpassion, an emergency fund started by APCOM staff donating their salaries. APCOM collaborated with SWING, the Thai Sex Workers Organization, based in Bangkok and Pattaya, and mobilized 20 000 baht (US$ 650) to purchase basic food and supplies for sex workers. Also, APCOM donated 9000 baht (US$ 300) to the Bangkok Rainbow Organization to support the health and well-being of LGBTI people in Thailand. You can watch a video here and read about other communities that have benefited from this emergency funding, and how you can support it.

“The human-interest stories included in the COVID-19 Effect Series raise the visibility of human rights violations and the challenges faced by LGBTI people and people living with HIV in accessing health services. The series amplifies community voices that have often been unheard in COVID-19 narratives,” said Eamonn Murphy, Director of the UNAIDS Regional Support Team for Asia and the Pacific, which has provided financial support to make the newsletter a reality.

To mark Zero Discrimination Day by making the voices of the communities heard, APCOM is launching a short report that compiles stories and articles published in the COVID-19 Effect Series.

GENEVA, 23 February 2021—UNAIDS warmly welcomes the appointment of Andrew Spieldenner as the Executive Director of MPact Global Action for Gay Men’s Health and Rights. MPact has been working since 2006 at the intersection of sexual health and human rights for gay and bisexual men and is linked to more than 120 community-based organizations in 62 countries. MPact has long been a key partner of UNAIDS—its work is critical for the promotion of the health and rights of gay and bisexual men and their communities and to ending AIDS.

“Andrew Spieldenner is a long-time respected HIV activist and scholar. In recent years, he has provided invaluable service to UNAIDS and the global AIDS response through his role as a delegate to the UNAIDS Programme Coordinating Board,” said Winnie Byanyima, UNAIDS Executive Director. “We look forward to continue working closely with him in this new position and to strengthen our relationship with MPact to address the challenges and inequalities faced by lesbian, gay, bisexual, transgender and intersex communities in accessing health and fully enjoying their human rights around the globe.”

Mr Spieldenner’s commitment to people living with HIV, lesbian, gay, bisexual, transgender and intersex communities, feminist principles and racial justice has been evident throughout his 30 years of activism. A skilled organizer, communicator and mentor, he brings to his new position at MPact a long history of engagement with networks of people living with HIV. Working within local organizations, national networks of people living with HIV, health departments and academia, he has been at the centre of movements for social justice, leading from within, in partnership with the communities of which he is a part.

Mr Spieldenner will take up his new role on 1 March 2021.

UNAIDS

The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 UN organizations—UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, UN Women, ILO, UNESCO, WHO and the World Bank—and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals. Learn more at unaids.org and connect with us on Facebook, Twitter, Instagram and YouTube.

On any given day, approximately 11 million people worldwide are in confinement. Drug injection and sexual intercourse occur worldwide in prisons. The risk of sexual violence among prisoners—and their insufficient access to condoms, lubricants, pre-exposure prophylaxis and harm reduction services—heighten their chances of acquiring HIV, hepatitis C and sexually transmitted infections.

Among people who inject drugs, recent incarceration is associated with an 81% and 62% increased likelihood of HIV infection and hepatitis C infection, respectively.

Closed settings should, in theory, favour the delivery of effective testing and treatment services, although treatment interruptions and concerns about confidentiality and discrimination pose challenges. In 2019, 78 countries reported to UNAIDS that HIV testing was available at any time during detention or imprisonment, and 104 countries reported that antiretroviral therapy was available to all prisoners living with HIV. Coverage of antiretroviral therapy is good, although gaps remain.

The risk of developing tuberculosis among the 38 million people living with HIV in 2019 was 18 times higher than in the rest of the world’s population. Tuberculosis remains the single largest cause of premature death among people living with HIV.

Scale-up of antiretroviral therapy and improvements in the integrated delivery of HIV and tuberculosis services have reduced tuberculosis-related deaths among people living with HIV by 69% globally, from 678 000 in 2000 to 208 000 in 2019. Among the 131 countries that reported data to UNAIDS and the World Health Organization in 2020, 48.9% of the estimated 815 000 people living with HIV who developed tuberculosis (incident cases) received treatment for both HIV and tuberculosis. 

The tuberculosis testing gap—the gap between the number of people living with HIV who are estimated to have tuberculosis and the number of people living with tuberculosis who have tested positive for HIV—is narrowing. However, the 456 426 tuberculosis cases among people living with HIV that were notified in 2019 represented just 56% of the estimated number of incident tuberculosis cases among people living with HIV that year. Among people living with HIV who were notified tuberculosis cases, 88% were on antiretroviral therapy in 2019.

Estimated global number of incident HIV-positive TB cases compared with the global number of notified new and relapse tuberculosis cases known to be HIV-positive and the global number of tuberculosis patients started on antiretroviral therapy, 2004-2019

At the end of January 2021, the Kyrgyzstan Constitutional Court decided to exclude HIV from the list of diseases that prevent people from adopting children or becoming guardians or foster parents. The barrier to parenting for people living with HIV in the country had been in effect for many years.

The change—brought about by a joint effort of activists, lawyers and human rights defenders, but primarily by people who personally suffered from discrimination and fought for their rights—is a victory against stigma and discrimination against people living with HIV in Kyrgyzstan.

Baktygul Israilova, pictured above and who leads the Country Network of Women Living with HIV, is one of those who were affected. Several years ago, she wanted to adopt a child. “At that time, I did not fully understand the depth of the problem. I thought that if I prepared all the necessary documents, submitted them to the right department, they would consider me and make a positive decision,” Ms Israilova said. “I am a mother of two wonderful girls, I have a job, a stable job, so at that time it seemed that everything should be on my side.”

When she found out that she could not adopt a child because of her HIV status, she was shocked. “I’m used to the fact that people living with HIV are constantly discriminated against, but why can’t they become parents and give their love and care to a child from an orphanage?” she said.

At that time, Ms Israilova was starting on her path in HIV activism. “Until that time I was always afraid of something, at first my HIV status. I was worried for my girls, I was worried that I would not find a job, I was afraid that people would not understand me, I was worried that I would not achieve anything in my life. But then I became tired of being afraid. It was a turning point in my life. It was then that I openly declared my HIV status and became the first woman in the country openly living with HIV.”

According to the Kyrgyzstan National Statistical Committee, in 2019 there were more than 2000 children and adolescents under the age of 18 years who were left without parental care, of which 592 were orphans.

In 2018, Ms Israilova met Svetlana Izambayeva, pictured above, an activist from the Russian Federation who is living with HIV and who became one of the first women in the Russian Federation to declare her HIV status openly. Ms Izambayeva had extensive and successful experience in the struggle for the right to adopt in her home country and helped and advised the women in Kyrgyzstan in their battle.

A similar case was being considered by the Kyrgyzstan courts in which the Kyrgyz lawyer Ainura Osmonalieva and lawyers from the Adilet legal clinic were trying to help a woman living with HIV to get custody of her nephew after the death of his mother.

The activists joined forces and resources and studied the entire existing legal framework, international obligations, ratified conventions and the United Nations Political Declaration on Ending AIDS, which the country had committed to implement. The process lasted for two years. Activists from other countries, particularly from the Eurasian Women’s Network on AIDS, helped to collect evidence. The activists highlighted examples of changes in legislation in three eastern European countries—the Republic of Moldova, the Russian Federation and Ukraine. The UNAIDS Country Office in Kyrgyzstan supported the advocacy efforts of the Country Network of Women Living with HIV at all stages and provided technical support to strengthen its organizational and advocacy capacity.

Ms Israilova said that when she had to speak and defend her position before the Constitutional Court judges, she was ready for any developments. “Even if we were given a negative decision, we would not have given up, but tried again and again to achieve a result where every person living with HIV can adopt or become a guardian of a child.”

“When we received a positive decision, I came home and told my girls about what we had achieved. They have long dreamed of a brother and even came up with a name for him. My girls are my light, which illuminates my path. I have managed to achieve a lot in life thanks to the fact that I have them. Now I must prepare all the necessary documents to give happiness to another child,” said Ms Israilova.

Photos: November 2019. Credit: UNAIDS

A spontaneous HIV test that yielded a positive result changed Martha Clara Nakato’s life forever. When Ms Nakato, who lives in Uganda, found out she was living with HIV, she was 14 years old and had never had sex.

“I accompanied my twin brother only to support him to take up the test. I didn’t know taking one too would change my life forever,” she says as she recalls her shock and confusion at her result.

Her brother’s HIV test came out negative. 

Ms Nakato soon discovered from her father that she was born with HIV. She is the only one of her eight siblings who contracted HIV from her mother. She lost her mother to AIDS-related illnesses when she was just five years old. 

“I don't know why this had to happen to me. Maybe I was the lucky one; maybe there was a purpose meant for me. When I look back, I now know the only way you can find your purpose in life is to think about that one thing that hurt you the most,” Ms Nakato says.

Ms Nakato has transformed her pain to power and works as a human rights defender and HIV advocate with the Uganda Network of Young People Living with HIV/AIDS (UNYPA). 

In 2019, she was recognized as one of the Global Fund to Fight AIDS, Tuberculosis and Malaria’s five faces that championed the worldwide sixth replenishment campaign.

“I do a lot of mentorship and motivational speaking,” says Ms Nakato, who uses her own story to demonstrate how adherence to HIV treatment can help people living with HIV live a full and healthy life. 

Much of Ms Nakato’s advocacy and mentorship involves interacting with young people in their communities with in-person dialogue. Following the COVID-19 outbreak, she had to rethink how to reach young people while adhering to the social distancing measures that followed because of the pandemic.

“Most of those engagements that involved face-to-face were not able to happen. Looking at young people in the rural areas who don’t have access to the Internet or a smartphone, we really had challenges reaching out to them,” Ms Nakato says.

However, Ms Nakato and her team realized the importance of reaching out to young people on social media platforms, such as Facebook, to get her message across. 

UNAIDS provides financial and technical support to the annual Y+ beauty pageant and youth summit, events that are organized by UNYPA. The pageant crowns a Mr and Miss Y+, encouraging young people living with HIV to come together, celebrate their beauty and address HIV-related stigma and discrimination.

During the COVID-19 outbreak, UNAIDS ensured that community-based organizations such as UNYPA had access to national platforms—for instance, the national COVID-19 national secretariat—so that organizations could engage in dialogue with the government and thereby provide better relief and food support to communities in need.

Ms Nakato was born in 1996, a time when HIV treatment was inaccessible in Uganda. In that year alone, 34 000 children between the ages of 0 and 14 years acquired HIV. 

Today, 95% of women living with HIV in Uganda have access to services to prevent vertical (mother-to-child) transmission of HIV. There has been a significant drop in vertical transmission and the country has achieved an 86% reduction in HIV infections among children since 2009. 

“I don’t want to give birth to a child who is HIV-positive or see any other young woman do so. We now have the power to prevent this from happening, not like many people in the past who didn’t have that chance,” she says. 

As an AIDS activist, Ms Nakato has plans for herself and society, hoping to see an AIDS-free world. She stresses the importance of adhering to HIV treatment to help make that a reality.

“One thing I know is that I am the proof of treatment. I am proof of what self-love is,” she says.

UNAIDS provides financial and technical support to the annual Y+ beauty pageant and youth summit, events that are organized by UNYPA. Above, Nabanoba Vivian Alice and Niwamanya Hillary, winners of the Y+ beauty pageant. Kampala, Uganda, October 2019. Credit: UNAIDS

GENEVA, 29 January 2021—UNAIDS is deeply troubled and concerned about the detention by military police of the Venezuelan citizens and humanitarian workers Johán León Reyes, Yordy Bermúdez, Layners Gutiérrez Díaz, Alejandro Gómez Di Maggio and Luis Ferrebuz, who are members of the nongovernmental organization Azul Positivo. The five have been held since 12 January 2021.

“I call on the Venezuelan authorities to release from police custody the five humanitarians working for the nongovernmental organization Azul Positivo, and to return essential equipment seized at the time of their arrest,” said Winnie Byanyima, UNAIDS Executive Director. “A strong and empowered civil society plays a central role in providing much-needed services to the most vulnerable people and is critical to making progress against the HIV pandemic and other health threats in the Bolivarian Republic of Venezuela.”

Azul Positivo was established in 2004 to work on the prevention of HIV in the state of Zulia, Bolivarian Republic of Venezuela. UNAIDS has supported Azul Positivo’s work for many years and has witnessed the positive impact of their contributions to the community.

UNAIDS is strongly supportive of the full empowerment and engagement of civil society organizations in the AIDS response and in humanitarian work. It looks forward to continuing its partnership with community and civil society organizations in the Bolivarian Republic of Venezuela, as well as with government officials, in ensuring that all people affected by HIV have access to HIV prevention, treatment and social support services and that their human rights are protected.

UNAIDS

The Joint United Nations Programme on HIV/AIDS (UNAIDS) leads and inspires the world to achieve its shared vision of zero new HIV infections, zero discrimination and zero AIDS-related deaths. UNAIDS unites the efforts of 11 UN organizations—UNHCR, UNICEF, WFP, UNDP, UNFPA, UNODC, UN Women, ILO, UNESCO, WHO and the World Bank—and works closely with global and national partners towards ending the AIDS epidemic by 2030 as part of the Sustainable Development Goals. Learn more at unaids.org and connect with us on Facebook, Twitter, Instagram and YouTube.

Among 151 reporting countries, 92 continue to criminalize HIV exposure, transmission and nondisclosure—all grave violations of the rights of people living with HIV that also frustrate efforts to control HIV epidemics. These laws reinforce stigma and discrimination against people living with HIV and those more vulnerable to HIV infection, they disregard up-to-date knowledge on the science of HIV-related risks and harms, and they have adverse impacts on public health.

The most recent data from population-based surveys show that while discriminatory attitudes towards people living with HIV are declining consistently in some regions, they are rebounding in others. In eastern and southern Africa, for instance, discriminatory attitudes have been reduced to historically low levels in some countries. Elsewhere, however, disconcertingly large proportions of adults continue to hold discriminatory attitudes towards people living with HIV. In 25 of 36 countries with recent data on a composite indicator that includes two types of discriminatory attitudes, more than 50% of people aged 15 to 49 years reported having discriminatory attitudes towards people living with HIV.

Nadezhda Kilar’s battles with her health service providers began several years ago. “I did not agree with how obstetrics services for women living with HIV are provided in our city,” said Ms Kilar. “From admission to discharge, there was a constant violation of rights.”

Ms Kilar, who lives in Tiraspol, in the Republic of Moldova, has been living with HIV for several years. Her antiretroviral therapy has suppressed her viral load to undetectable levels, but during pregnancy and childbirth she was isolated. She was kept in an isolation ward, gave birth in a separate delivery room and after giving birth was placed in a special room for women living with HIV—a room with bars on the window.

“All the other women leave through the front door, where relatives meet them with flowers and a photographer. But I was let out through the back exit, where there are garbage cans,” she said.

And the discrimination did not stop with her. “Although my son does not have HIV, in the maternity hospital he was alone in a separate special room, under a sign with “HIV contact” written on. Why should a child feel this stigma?” Ms Kilar said.

“I want to give birth to my next child in a normal maternity hospital. And I do not doubt that it will be so. For something to change, a lot still needs to be done, but the main thing is I must defend my rights,” she said.

Ms Kilar’s relationship with her husband started to break down after he became violent towards her. For a long time, she didn’t do anything about it, as she thought that violence was the norm. “My father often beat my mother; I myself was twice in hospital after his beatings.” Not knowing what to do, she sank deeper and deeper into depression. “I didn’t want to live,” she said.

But change slowly came about. When she realized that she could not cope with her financial problems, the violence and her depression, on the advice of a peer consultant at the HIV clinic she attends in Tiraspol she joined the Women’s Mentoring Programme, along with 20 other women living with HIV from different communities in the area. The Women’s Mentoring Programme, a joint project of UN Women and UNAIDS and supported by the Government of Sweden, works through peer consultants and mentors to help women living with HIV to understand and identify their problems, learn about their rights and get support in the fight against violence and discrimination.

“I understood that it would not be the same as before. I realized that I would not tolerate the beatings,” Ms Kilar said.

Since 2019, Ms Kilar has been working in a sales job and has been studying at the university to become a teacher. “It’s not easy for me. I do not sleep much at night, but I have gained confidence that I can solve problems on my own,” she said.

Iren Goryachaya, the Programme Coordinator for the Women’s Mentoring Programme, explained that the programme provides a range of services. “We not only deal with the issues of discrimination in a health-care institution or the fight against violence—we see a woman as a person from different perspectives. First, it is important to help women accept their HIV status and overcome self-stigma. Without this, it is impossible to achieve a different attitude towards herself either from doctors or men.”

“Often, women in the Republic of Moldova have insufficient access to reliable information about HIV. They still cannot defend their right to safe sex. Various forms of violence, including sexual violence, the widespread violation of women’s rights and the controlling behaviour of men further aggravate the situation. All this deprives women of the opportunity to defend their right to health,” said Svetlana Plamadeala, the UNAIDS Representative for the Republic of Moldova.

Ms Kilar looks to the future with confidence. “I see myself as a free woman. I do what I want. My children are growing up in a safe environment. I don't worry about my HIV diagnosis. If I decide to have another child, I will give birth in a normal hospital.”