"We are here, we are not giving up". These are the encouraging words of Thérèse Omari, an activist who has been involved in the fight against AIDS for more than 20 years within the Femme Plus organisation, of which she is the co-founder and National Director in the Democratic Republic of Congo.

Femme Plus, true to its motto "Positive Life", works to improve the quality of life of people living with HIV. "The objective is for our beneficiaries to live in harmony with themselves, with their environment and with their beliefs," explains Ms Omari. 

To this end, the organisation provides psychosocial support to people living with or affected by HIV through counselling, care and support services. Femme Plus also carries out numerous activities in communities to free people living with HIV from the burden of stigma. "There is still a lot to be done to change behaviours towards people living with HIV," says Ms Omari. In the Democratic Republic of Congo, HIV-related stigma is still very present, especially in community settings. "Many people living with HIV say they no longer participate in family gatherings and other events fearing discrimination. It is therefore essential that people who come to Femme Plus feel that they are considered normal people with rights and obligations," she explains. In order to raise awareness, the organisation runs workshops to provide communities with the knowledge to better support people living with HIV, without isolating them or treating them differently.

Ms Omari also deplores the persistence of stigma and discrimination in health care settings despite the numerous HIV-related trainings for health care workers. In particular, she receives testimonies from pregnant women who have tested positive for HIV in one facility and wish to give birth in another, fearing of being stigmatised and treated differently. This is problematic as it can be detrimental to the provision of appropriate care for the mother and baby.

Ending discrimination and ensuring that the rights of people living with HIV are protected is therefore one of Femmes Plus' priorities to help them assert themselves and make the right choices about their health. "We encourage people living with HIV to empower themselves, to speak up about their condition, for their own well-being," says Ms Omari. 

Ms Omari also raises other obstacles to the AIDS response. The lack of access to prevention and treatment, and the low rate of people with an undetectable viral load, are among the shortcomings of the fight against HIV in the Democratic Republic of Congo. "Not everyone has access to testing. There are still people with HIV who live in anonymity," warns Ms Omari.

To overcome this gap, Femme Plus works with community leaders to teach them how to stay healthy with HIV. Among other activities, it also engages with pregnant and breastfeeding women, providing them with the knowledge to protect their babies and thereby stop vertical transmission.

"As long as there are people who do not know their HIV status, who do not have access to treatment and who have not reached an undetectable viral load, the fight of Femme Plus will remain meaningful," insists Ms Omari.

She concludes by pointing out that the fight against AIDS in the Democratic Republic of Congo is taking place in a context where resources are limited. "The local population must be involved in psychosocial care and prevention activities to make HIV an electoral issue," she explains. While waiting for more substantial funding from the State and better traceability of funds, community-led services have a crucial role to play with people living with HIV. They are at the heart of the fight against AIDS, advocating for access to prevention and life-saving care, calling for respect for human rights and addressing the specific needs of their beneficiaries. Their support is therefore pivotal in meeting the challenges of the HIV response and ending AIDS by 2030.

Ms Martine Somda Dakuyo was 34 years old when she was diagnosed with HIV. The news, which she describes as traumatic, suddenly shattered all the hopes and plans of this mother of four. "I suffered a lot from the fear of dying prematurely and in deplorable conditions," she says. Despite a deep sense of anger and injustice, she finally came to terms with her status and even went public in the media to encourage people living with HIV to accept themselves and get help.

Today, with her treatments controlling her viral load and keeping her healthy, Martine can look forward to a happy and productive life. She is one of the pioneers in the fight against AIDS in Burkina Faso, having fought for nearly 29 years with the NGO Responsabilité Espoir Vie Solidarité (REVS+). This association, of which she is the initiator and President of the Board of Directors, works for the prevention of HIV, the care of people exposed to the virus and the promotion of their human rights.

"The fight against AIDS in West and Central Africa remains a health emergency," says Ms Somda. Although the HIV prevalence rate is 0.7% in Burkina Faso, Ms Somda asks us about the situation of key populations, who are more exposed to the dangers of HIV, and the reasons that lead to this sad reality. In particular, she mentions the political and security context in the region, proposed laws that discriminate against key populations and the low involvement of people affected by HIV in the fight against AIDS as obstacles to effective care.

In order to protect key populations from the dangers of HIV, Martine’s ambition is to provide universal access to prevention methods, which are a crucial aspect of the fight against AIDS.

"Focusing on effective access to health and rights for people in situations of social rejection and criminalisation is the challenge for the fight against AIDS," she says.

In order to achieve universal access to prevention, care and follow-up services, Ms Somda advocates, among other things, greater involvement of people affected by HIV in the development of national AIDS strategies, better recognition of actions carried out on the ground and the elimination of social and economic inequalities that fuel the epidemic.

In addition, Martine expressed concern about conservatism and cultural, religious and traditional pressures that lead to stigma and discrimination against people living with HIV.  This discrimination manifests itself in various forms; through verbal or physical attacks, threats, harassment, arbitrary arrests, she observes. Such behaviour is dangerous and represents a major obstacle to the fight against AIDS, as it discourages people living with HIV from seeking appropriate services. There is an urgent need to stop such violence in order to create a climate where the rights of people living with HIV are respected and protected. Establishing a more inclusive discourse, free of discriminatory and erroneous prejudices, will allow for a more effective response guided by values of respect, integrity and equality.

With this in mind, in 2015 REVS+ set up workshops and training for decision-makers, religious and customary leaders, health professionals, police and the media. The aim of these activities is above all to denounce stereotypes about people living with HIV and to put an end to discrimination.

"The contribution of community services to the response to HIV is well known and proven, as they complement the services offered by the public health system," explains Ms Somda. Ensuring the continuity of their activities and allowing the greatest number of people to benefit from them, is a necessity for effectively combating AIDS in the region. The resilience of networks such as REVS+, which ensured that prevention activities and care services for people affected by HIV were maintained, was one of the reasons why the impact of the COVID-19 pandemic on people living with HIV was minimised.

Finally, to ensure the effectiveness of the fight against AIDS in the region, and more specifically in Burkina Faso, Ms Somda hopes to see more funding that is "more field-oriented, aligned with policies, strategies and in line with the needs of marginalised groups".

Through this exchange with Martine Somda, we see once again that there is still a long way to go to end AIDS in the region. However, this goal is within reach if all actors in the HIV response work together to develop multi-sectoral strategies. Implementing measures to achieve universal access to prevention services, eliminating HIV-related inequalities and stereotypes, and better managing investments are key priorities for ending AIDS by 2030.

Last week Antigua and Barbuda’s High Court struck down laws criminalizing sexual acts between consenting, adult, same sex partners. Orden David, a gay man, brought the case.

In some ways, he’s an unlikely candidate. He describes himself as “private” and “quiet”—characteristics that make him an excellent HIV counsellor and tester. By day he works for the Health Ministry of the very government he challenged. For the past eight years clients have trusted him to treat their interactions with care and confidentiality. He almost seems wired for discretion.

When asked about the personal experiences that compelled him to become the face for a challenge to his country’s “buggery” laws, he’s reluctant to recount them. But the laundry list is included in the judgment.

Slurs.

Insults.

Bullying throughout school.

Photos taken by strangers and posted to social media.

Two unprovoked physical attacks: one on the street at night, another at work.

And most upsetting for Mr David, a string of interactions with police officers who either harassed him or seemed entirely unmotivated to offer the protection afforded to other citizens. Once when he tried reporting a robbery, an officer responded, “Why are you gay?”. Another time police officers neglected to notify him about a court appearance and the case against his assailant was thrown out.

Throughout the Commonwealth Caribbean, homophobic attitudes are not just a matter of personal opinion or conservative religious teaching. In many minds they are sanctioned by states that have retained laws dating back to the 19^th century which criminalize same-sex relationships.

A 2014 online survey of men who have sex with men in the Caribbean commissioned by UNAIDS found that within the past month one-third (33%) of respondents had been stared at or intimidated while almost a quarter (23%) experienced verbal abuse. About one in ten (11%) reported being physically assaulted in the past five years.

Mr David has a unique perspective on how these dynamics—intolerant social attitudes, homophobic abuse, punitive laws and a lack of legal protection—affect the LGBT community’s access to HIV services. He’s had clients refuse to accept calls or show up to treatment after testing positive.

“Because the country is so small and everybody knows everybody, there is a lot of fear,” he explains. (Antigua and Barbuda has a population of 98,000 people.) “People are scared to access services on their own or even pick up their medicines. I normally pick up stuff for people. At the Ministry of Health we distribute condoms and lubricants for free, and the test is free. The access is good, there is no doubt. But persons are sometimes not brave enough.”

The second claimant in the case was the non-governmental organization Women against Rape (WAR). For many years WAR has provided counselling to people from key and vulnerable communities. The group submitted that members of the lesbian, gay, bisexual and transgender (LGBT) population were often fearful of being treated in a hostile manner by healthcare workers, resulting in some avoiding HIV testing, treatment and follow-up care.

“HIV has been branded by society as a disease linked to immoral behaviour,” said Alexandrina Wong, WAR’s Executive Director. “Coupled with the stigma entrenched in our laws and policies, this creates a hostile environment for vulnerable populations, especially men who have sex with men, sex workers and transgender people who have already been pushed to the very margins of society. There is every indication that this contributes to the transmission of HIV.”

A 2021 round-up of research on human rights, HIV and men who have sex with men (MSM) by UNAIDS found worse outcomes across the testing and treatment cascade for LGBT people in countries where they are criminalized. Those living in states with the most repressive laws were three times less likely to be aware of their HIV status than counterparts in other places. And MSM in countries with criminal penalties were found to be between two to five times more likely to be living with HIV as those in countries without punitive laws.

The Antigua and Barbuda case was one from a five-country litigation strategy coordinated by the Eastern Caribbean Alliance for Diversity and Equality (ECADE). ECADE Executive Director, Kenita Placide, reflected that the initiative started in 2015 when activists gathered to discuss how punitive laws in the Caribbean increased stigma, discrimination and even violence.

“The process of litigation is important, as it underscores how these laws contribute to the stigmatisation of LGBT people, how they legitimise hate speech, discrimination and violence and tear at the fabric of our society. Our governments have sworn to protect and uphold the rights of all and act in a manner that promotes the prosperity and well-being of all. This judgment is in keeping with this commitment,” they said.

The partners in Antigua and Barbuda know law reform isn’t a magic bullet. But they consider it an important step forward toward ending the inequalities that drive HIV, injustice and lack of access to opportunities.

“We now have safety under the law. We have to look at how we get members of the family and church to see people as equal regardless of sexual orientation, class, creed or anything like that. The judgement paves the way for higher levels of acceptance for inclusion and diversity,” Ms Wong ended.

During the 50th Programme Coordinating Board meeting held in Geneva, Thailand announced formally funding community-led health services (CLHS) as public health services. The National Health Security Board of Thailand has approved HIV prevention, treatment, and care to be directly reimbursed by the Universal Health Coverage scheme.

“This is a key milestone for Thailand regarding sustainable community-led service delivery and sustainable financing for community-based organizations. It is a model for the region and countries globally,” said Winnie Byanyima, Executive Director of UNAIDS.

The role of community-led organizations in providing HIV services is well recognized as an essential component leading to ending AIDS by 2030. Using people-centered, rights-based and stigma-free approaches by and for key population community and people living with HIV has shown to lead to   an increased uptake of essential HIV services.

Since 2016, Thailand has started to fund project-based community-led HIV services through the Universal Health Coverage scheme. The allocation of the national budget has increased over time to support community-led organizations (CLO) working with people living with HIV and key populations.

However, until now, year-to-year contracting mechanisms led to operational gaps affecting the provision of HIV services. The formal recognition of community-led health services under the UHC scheme will allow for faster access to funding, continuity of service delivery, and increase CLOs capacity for greater coverage of HIV services. 

“To reach the ambitious goal of ending AIDS, we have partnered with community-based organizations who play a vital role in HIV service provision to hard-to-reach populations and marginalized communities,” said Anutin Charnvirakul, Deputy Prime Minister and Minister of Public Health of Thailand.

Organizations led by communities who are eligible to provide HIV and STI services in their communities can register as service providers under the National Health Security System. To get this recognition, they need at least one year of service experience and require an accreditation by the Ministry of Public Health or other certified bodies. Community health workers with relevant experience also have to be certified by a government agency or accredited organization.

The UNAIDS Thailand office has been working with different partners to support the scale-up of   community health workers' certification and other accreditations as well as strengthening the sustainability of the community response. 

In attendance at the 50th PCB were Dr Jadej Thammatacharee, Secretary General, National Health Security Office, Dr Opart Karnkawinpong, Director General, Department of Disease Control, Ministry of Public Health, Dr Suwit Wibulpolprasert, Advisor to the Office of the Permanent Secretary, Ministry of Public Health and the entire three day meeting was chaired by H.E. Mr Anutin Charnvirakul, Deputy Prime Minister and Minister of Public Health.

A poster exhibition entitled YES…BUT! highlights the disparities existing in the HIV response in eastern Europe and central Asia (EECA). Some posters display important key facts and figures on the progress made as well as the current gaps hindering progress in the region. Others focus on the impact that AIDS-related stigma and discrimination has on people living with HIV in eastern Europe and central Asia.

For example, one poster highlights that while all people living with HIV are eligible to start HIV treatment immediately regardless of their CD4 count, there has been a 32% increase in AIDS-related death in the region since 2010. Another one focuses on the fact that, even though HIV self-testing and free anonymous HIV testing are available and accessible in most countries, every second an HIV diagnosis is made late—and one in three is made very late.

Tahmina Khaidarova, Director of the Tajikistan Network of Women Living with HIV is convinced that one of the reasons for widespread late diagnosis and increased number of deaths is the stigma that continues to prevent people from accessing HIV testing. “I told my story to help women who live in a vicious cycle of stigma. Stigma makes us vulnerable. We must fight. And first of all, we fight our own fears.” says Mrs Khaidarova in one of the posters.

The EECA region has the fastest-growing HIV epidemic in the world. The war in Ukraine places under huge strain the hard-won gains made in recent years in the HIV response in the countries involved and in the entire region.  

“We must keep the HIV epidemic in the region in the spotlight and support the resilience of people, community-led organizations, and countries to ensure the AIDS response succeeds,” said Eamonn Murphy, Deputy Executive Director, Regional Director for Eastern Europe and central Asia a.i. 

The posters will be shown at the UNAIDS Regional Cluster Meeting for eastern Europe and central Asia to take place in Geneva, from 14 to 17 June 2022.

Urgent call issued for a dramatic upscaling of international support for the heroic efforts of civil society-led networks to reach people with life-saving HIV treatment 

GENEVA, 13 April 2022—The war in Ukraine has resulted in the destruction and disruption of health services and logistical supply chains that hundreds of thousands of people living with and affected by HIV depend on for survival. More than a quarter of a million Ukrainians are living with HIV, and lack of access to antiretroviral therapy and prevention services would mean a wave of deaths and risks a resurgence of Ukraine’s AIDS pandemic. The community-led networks which are vital to maintaining life-saving services need an urgent upscaling of international support.  

More than 40 health facilities that offered HIV treatment, prevention and care services before the war are now closed and there are various levels of service disruption at other sites. By 11 April, the World Health Organization (WHO) had verified more than 100 attacks on health facilities in Ukraine, while supply routes within the country have been thrown into disarray. The United Nations Children’s Fund reports that attacks on water system infrastructure and power outages have left an estimated 1.4 million people without access to water, while another 4.6 million have only limited access. Meanwhile, the World Bank has said it expects Ukraine’s economy to shrink by 45% this year, posing a dire threat to the maintenance of vital health and social programmes. 

An initial delivery of more than 18 million doses of life-saving antiretroviral medicine procured by the United States President’s Emergency Plan for AIDS Relief (PEPFAR) that arrived in Lviv last week is now being distributed in partnership with the Public Health Center of the Ministry of Health of Ukraine and 100% Life, the largest organization of people living with HIV in Ukraine. If they can be delivered to those in need, the medicines are sufficient to cover a six-month supply for all people living with HIV on first-line treatment. This first tranche is part of PEPFAR’s commitment to fund 12-month HIV treatment needs in Ukraine. UNAIDS estimates that 260 000 people were living with HIV in Ukraine before the war broke out, 152 000 of whom were taking daily medication for HIV.  

The Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) is also providing emergency funding to ensure the continuity of life-saving HIV and tuberculosis services. 

Attention is now on ensuring that the life-saving HIV medicines reach all people in need in time. Civil society organizations are mounting a heroic effort to deliver vital medical supplies and HIV services to people living with and affected by HIV, including to vulnerable populations. They are reaching people in extraordinary challenging locations, despite the huge obstacles. But the civil society organizations on which this delivery and care system depends need further international support to be able to continue their work.  

“The situation for people living with HIV in Ukraine is desperate. We are trying to deliver medicines, food and other emergency assistance to people in need, but the work is dangerous and volunteers are putting their lives at risk,” said Dmytro Sherembey, Head of the 100% Life Coordination Council. “If we don’t get more help, I am not sure how much longer we can continue, especially reaching people in the front-line zones.” 

UNAIDS, which has released an initial US$ 200 000 in emergency funds to address urgent humanitarian and programme demands in seven cities that have large HIV epidemics (Chernihiv, Dnipro, Kharkiv, Kryvy Rih, Kyiv, Odesa and Poltava), has issued an urgent call to the international community for an additional US$ 2.42 million for civil society organizations providing HIV services in Ukraine and for those receiving refugees affected by HIV in other countries, as part of the wider upscaling needed.  

“Civil society organizations and communities of people living with and affected by HIV are the bedrock of the HIV response in Ukraine,” said Winnie Byanyima, Executive Director of UNAIDS. “They urgently require additional financial and logistical support to ensure the continuity of HIV treatment, care and prevention programmes. We urge all donors to be part of enabling this vital service to save lives and prevent a resurgence of the AIDS pandemic in Ukraine.”  

It is only because Ukraine’s pioneering response to HIV has been a partnership between public and community-led provision that it has been able to continue to provide for people even through the horrors of war. But the civil society networks, on whose creativity and courage the HIV services depend, require a boost in international support to ensure continued operations at the level required.  

Getting medical supplies and services to vulnerable groups of people remains extremely challenging and UNAIDS is working with humanitarian partners in Ukraine and internationally to advance urgent solutions to provide medical and humanitarian support to hundreds of thousands of Ukrainians.  

The Alliance for Public Health is working to provide the emergency support needed during the conflict, using minibuses to meet pressing humanitarian needs, including the evacuation of vulnerable populations and the delivery of food and medicines. Communities on the front line of the response are making exceptional efforts to reach people. For example, mobile clinics have been deployed by the Alliance for Public Health to take opioid substitution therapy to people who use drugs in areas where facilities have been forced to close. UNAIDS is also working with the Global Fund and with a UNAIDS Cosponsor, the United Nations Office on Drugs and Crime, to obtain additional supplies of opioid substitution therapy. 

The conflict has forced millions of Ukrainians to leave the country and thousands of Ukrainian women and children living with HIV are in need of support in host countries. Civil society networks supported by UNAIDS Cosponsors and partners are helping refugees access antiretroviral therapy in the Republic of Moldova and across the European Union.  

WHO has helped to broker a deal with the pharmaceutical company ViiV Healthcare to provide donations of HIV medicines to Czechia, Poland and other European Union countries receiving large numbers of Ukrainian refugees.  

UNAIDS is also urging the international community to help refugee accommodation centres strengthen their support for people facing the highest risks, by expanding psychosocial services, HIV treatment and prevention services, and services related to gender-based violence. A UNAIDS Cosponsor, UN Women, has said that reports of sexual abuse and human trafficking in Ukraine indicate a protection crisis. UNAIDS has warned of increased risks for lesbian, gay, bisexual, transgender and intersex people. 

Ms Byanyima reaffirmed the United Nation’s call for an end to the war. “The biggest need is for peace”, said Ms Byanyima. “The war in Ukraine must stop—now. Recovery requires an end to this war. And even when it ends there will be so much help needed. Ukrainians living with HIV have been put in grave danger by this war. The civil society-led responder networks for HIV services who risk their lives to save lives need every possible support.” 

HIV hotline number in Ukraine: 0800 500 451. 

More support for Ukrainian refugees living with HIV can be found on the ART Initiative for Ukrainians Abroad website, which was established in coordination with Ukraine’s Public Health Center. More precise data on the whereabouts and needs of people living with HIV in Ukraine and those forced to flee the country are being collected. 

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.

Anastasiia Yeva Domani is the Director of Cohort, an expert on the Working Group of Trans People on HIV and Health in Eastern Europe and Central Asia and a representative of the transgender community on the Ukrainian National Council on HIV/AIDS and Tuberculosis.

UNAIDS spoke to her to see how she and the wider transgender community are coping after the Russian attack on Ukraine.

Tell us a bit about yourself and the transgender community in Ukraine

I am the Director of Cohort, an organization for transgender people. Cohort has existed for about two years, although I have been an activist for more than six years. According to the Public Health Center of the Ministry of Health of Ukraine, before the war there were about 10 000 transgender people in the country, although that number is likely to be an underestimate since many transgender people are not open about their gender identity. Many only seek help during a crisis—this was the case during the COVID-19 pandemic, and is happening now, during the war. Today, we are receiving requests for help from people we have never heard from before, people who are in dire need of humanitarian, financial and medical assistance.

Ukraine created the most favourable environment for transgender people in the post-Soviet countries with regard to changing documentation and the legal and medical aspects of gender transition. It is far from perfect, but we and other organizations have done our best to improve it. Since 2019, transgender people have been represented on the Ukrainian National Council on HIV/AIDS and Tuberculosis.

What was the situation like for transgender people at the beginning of the war?

In 2016, a new clinical protocol for medical care for gender dysphoria was adopted in Ukraine, which greatly facilitated the medical part of gender transition. Thanks to it, the next year people were able to receive certificates of gender change.

However, many transgender people have yet to change all their documentation. Some people didn’t change any, some only changed a few documents and only a few changed absolutely all of them, including driver’s licences, documents on education and those that relate to military registration and enlistment. We warned about this, and now there is a war. Many transgender people didn’t realize that they needed to be deregistered at the military registration and enlistment office.

Due to martial law, men aged 18–60 years cannot leave the territory of Ukraine if they do not have permission from the military registration and enlistment office. We have a lot of non-binary people with male documentation who cannot leave.

With the outbreak of the war, many transgender people moved to western Ukraine. But, if according to your documents you are a man, you cannot leave Ukraine.

What is the situation now and what is the focus of your work?

Because of the war, in some cities there is no one left at all. Kharkiv had the largest number of transgender activists after Kyiv, including many who moved there from the occupied Luhansk and Donetsk regions in 2014. And now they must move again. We have no information about the death of any transgender people, but I think that this is only because there is no connection with some cities, such as Mariupol. Many simply did not have time to leave the city, and then it became impossible. I’m afraid that the statistics will be terrible, it just will take time to understand what happened there.

There is a lot of work going on in Odesa now—we have two Yulias there, transgender women from whom the community receives tremendous support. They took on many issues of support and funding. In Odesa, the situation is better with hormones, with medicines. We also still have a coordinator in Dnipro—she also does a lot.

Our work is now focused on financial, medical and legal assistance to transgender people who are in Ukraine, no matter where, in western Ukraine in shelters or apartments, or staying in their cities where the bombings are. Everyone has fears, but you still need to have some kind of inner core and try to fight. I don’t think everyone should leave. I understand that many people have a grudge against society, the state. For many years, decades, they lived as a victim. There is nothing to keep many of them here—there is neither work nor housing.

Who is supporting you financially?

We had projects planned for 2022, and literally on the first or second day of the war representatives of our donors said that the money could be used not only for planned projects but also for humanitarian aid. This included RFSL, Sweden, which approached this issue in the most flexible way and allowed us not only to use the project money but also to send money directly to our coordinators, so that they themselves could pay for people’s housing, travel, etc.

Then GATE (Global Action for Trans Equality) also immediately said that their funds could be used for humanitarian aid, and promised additional funds. The Public Health Alliance, through the Global Fund to Fight AIDS, Tuberculosis and Malaria, allowed changes to be made to the budget and the nature of the planned activities.

Now we will do what we can do in the context of the war, and the mobilization of the community will continue in Dnipro, Odesa, Lviv and Chernivtsi. New partners appeared that immediately responded to our needs.

I use OutRight Action funds every day for the humanitarian needs of transgender people, and also funds from LGBT Europe. There are also private donations, not large, of course, but they are also there.

What does your average day look like?

My day is filled with communication with journalists from leading publications. I also go to supermarkets for groceries and distribute them to those who need them—I have Google forms where I can see requests for help.

I administer requests for consultations with a psychologist and an endocrinologist, who continue to work in Ukraine. I receive many questions related to crossing the border and I provide information on how to communicate with the military registration and enlistment office and on which documents they need for deregistration.

There are a lot of calls, so I charge the phone five times a day. I have two Instagram accounts, two Facebooks accounts, three mail addresses, Signal, WhatsApp, etc. You need to be constantly in touch. I also need time to stand in two-hour queues at the post office—it’s such a waste of time, but people need the medicines I send. I also need to leave time to monitor the news, I need to know what is happening at the front, in the cities.

What is giving you strength?

Until my family and child left the city, I could not work in peace.

I am currently in Kyiv. In the first 10 days of the war I felt shock and fear—we literally lived from one hour to the next. Now we have got used to the danger and I’m not afraid anymore. I decided for myself, if it is destined, then so it will be. I no longer go down to the shelter: so much work, so many requests for help, calls, consultations every minute.

I was born here, in Kyiv, this is my home town. I realized that when things are bad for your country, you have to stay. I can’t run away, my conscience just won’t let me. I can’t because I know my city needs to be protected. You don’t have to be in the military to help—there is military defence, but there is also volunteer work, humanitarian aid is a lot of work.

What gives me strength? Because this is my country, I understand that everyone who can do anything, on any front, is there. We can do it everywhere, everyone can contribute, do something useful, and that gives me a sense of being needed, a sense that we can all do so much together.

Yana Panfilova is Ukrainian and was born with HIV. When she was 16 years old, she created Teenergizer, a civil society organization to support adolescents and young people living with HIV in Ukraine. Since 2016, Teenergizer has been working internationally, promoting the rights of teenagers and young people in Ukraine and in seven cities in five countries across eastern Europe and central Asia. In 2019, the organization began providing peer counseling and psychological support to adolescents, and has trained more than 120 online consultants–psychologists to support young people across the region. In June 2021, she spoke at the opening of the United Nations General Assembly High-Level Meeting on AIDS. When the war in Ukraine started, she left Kyiv, Ukraine, with her family and made her way to Berlin, Germany, from where she is continuing her work to support young people living with HIV in Ukraine.

Why and how did you leave Kyiv?

Within days of the start of the Russian invasion I understood that we needed to make a life-changing decision—people with machine guns were patrolling the streets. I had to convince my mother that we needed to leave, because she was reluctant to go. We packed up our lives in less than an hour, drove to Kyiv railway station, left our car there and boarded the first train that we could find. There were so many people, mothers, children, and fathers and brothers seeing off their families, and many people were panicking. We had to stand on the train for 12 hours, with our suitcases and our cat. When our grandmother caught up with us at our first stop, we travelled together from Ukraine, along with her dog, crossed the border to Poland and went on to Berlin. The entire trip took seven days. It was the longest and most challenging trip of my life—I didn’t want to leave my beautiful Kyiv not knowing where we would end up. Now we are here in Berlin, refugees, safe and secure, but still in disbelief about what we have been through and distraught about what is happening to the people of Ukraine. But at least we are safe and together—my mother, my grandmother and her dog, and me and my cat. I was lucky that I brought enough antiretroviral therapy to last about two months.

Are you settled in Berlin?

I’m still in limbo, like millions of other Ukrainian women and children who have made this journey. But everyone we have met at every step of this journey has been so kind and welcoming. We are now clarifying the legal aspects of how to stay here in Berlin for the next few weeks and how we can access local medical and social services. Even how we can rent an apartment is still not yet clear. We made an appointment online with the municipality of Berlin to clarify the details with them. They are working to provide me with medical insurance so I can get access to medical care and uninterrupted access to HIV treatment.

I am also in contact with Berliner Aids-Hilfe, one of the oldest nongovernmental HIV organizations in Europe; after the war in the former Yugoslavia, they have a lot of experience in working with migrants living with HIV. They have been amazing, ready to help with access to antiretroviral therapy as well as the other needs that Ukrainians living with HIV will have here in Berlin.

So, you're more or less safe now. How are the other young people from Teenergizer doing?

Most of our teenagers living with HIV have already left Ukraine and now they are in Estonia, Germany, Lithuania, Poland and other countries. We are in contact with most of them every day. Some of our activists chose to stay with their parents in Kyiv and other cities that are under attack. We are now clarifying the latest information and trying to monitor where everyone is, and if they are safe. But this is not a quick or easy process. Everyone is now trying just to survive and stay in contact. Our staff, peer educators and clients are now scattered across different countries, each with different laws, treatment regimens and access to the Internet. Those still in Kyiv are connected with our partners, who are still providing access to antiretroviral therapy and emergency humanitarian assistance. Most of our consultants–psychologists are still providing online assistance to those in most in need.

What are the issues you are dealing with to stay in Berlin?

The people here in Berlin and all the Germans we have met since we arrived have been incredibly kind and welcoming. We are very grateful. I know all cities across Europe are struggling to support millions of Ukrainians, but I don’t think we could have found a safer and more tolerant place to stay than Berlin.

Of course, our most urgent questions are of a legal nature related to temporary status here and, second, questions about access to medical care and antiretroviral therapy. Third is housing. I never thought housing would be so important or so nerve-wracking. Local volunteers are helping around the clock, and millions of Europeans have opened up their homes. But for the hundreds of thousands of Ukrainians still living in warehouses, shelters and other temporary accommodation, the lack of a place you can call a temporary home can crush your spirit.

What do you think is most important to keep doing now?

No matter what happens with the war, we have to continue supporting each other in the Teenergizer family. In Ukraine, we spent years fighting so that young people living with HIV could have our health and rights protected. And now it feels like so many of our hard-won gains have disappeared overnight. In the middle of this crisis, we have to keep standing up for our rights and focus on the urgent needs facing the most vulnerable members of our Teenergizer network. I am so lucky to be alive and here in the safety of Germany. But many of our friends are still in Kyiv and in other cities across Ukraine, fighting for their lives and our country. Some of them have no way out and others don’t want to leave their homes and their families. Now, more than ever, they need our support and reassurance that we will continue to do everything we can to support them when they need it most.

First, we need to help them to navigate this new crisis and continue life-saving services—HIV treatment for those who urgently need it, and prevention and testing services. Second, during this crisis, we must continue to provide young people with mental health services, especially peer counselling. In our region, HIV is more of a social problem than a health problem. Today, young Ukrainians living with HIV are facing the triple crises of their health, their safety and acute stress and depression caused by the war. Psychologists call it PTSD. This trauma is continuing for an entire generation of Ukrainians. Young people who need professional psychological support will start using drugs and some of them will contract HIV, but they will be too scared or ashamed to ask for help in the current crisis. The same applies to adolescent girls and women who cannot exercise their reproductive and sexual rights, or young people who do not use a condom during sex, or millions of Ukrainian women who are at risk of exploitation when they are alone in Europe, away from their families and friends. Today, thousands of adolescents still in Ukraine who are living with HIV are afraid to reveal their status. Many still do not know how to protect themselves from HIV and from the violence of war. Millions of Ukrainian youth are left alone to cope with their anxieties and fears, and an entire generation will be dealing with post-traumatic disorders—this needs urgent attention. I am convinced that if we provide even basic counselling and support now, young people facing multiple crises will be better able to cope with their problems for years to come.

And also no matter what, we have to push politicians to listen to young people and allow them to influence the decision-making process about their own health and future. The voices of young people, especially young women, should be heard to stop the war and rebuild Ukraine.

How do you see the future of Teenergizer now?

Today, me, my family and my country are facing the greatest crisis of our lives. So if I am not sure about tomorrow, it is difficult to see what the future holds. Over the years, we built a real family, teams of young Teenergizer leaders in different cities in eastern Europe and central Asia—in Kazakhstan, Kyrgyzstan, Tajikistan, Ukraine, even in Russia. But now we are divided. After the Second World War, Winston Churchill said that there would be a wall. And I think that a new wall is appearing now.

What would you say today if you were again on the podium of the United Nations General Assembly?

This is a war between the old world and the new world.

We are young people who want to live in a new world, where there are no wars, where pandemics such as HIV, tuberculosis and COVID-19 are ended, where poverty and climate change are solved. In this new world, all people, no matter who they are or who they love, whatever language they speak or what passport they hold, can enjoy freedom and live their life with dignity, and travel and move across open borders, between peaceful countries. We learned how important and precious this was in recent years when Ukrainians could travel. We could see how peace-loving people lived in other parts of the world, and it made us appreciate the beauty and freedom we have in Ukraine. Today, more than ever, we only understand what we want to rebuild in our own country when we compare it to the values we find in other countries.

And it is this old world that is financing and sustaining this war. This is a road to nowhere.

With the billions spent on this senseless war, the world could find a cure for HIV, end poverty and solve other humanitarian crises.

The new world is about development, not destruction. It is about being able to improve yourself, improve the quality of your life and really support others to do the same.

Everything has an end. And the war will eventually end. What will you do on the first day after the end of the war?

I'll start to read Leo Tolstoy’s book War and peace.

Ten days after the start of the Russian invasion of Ukraine, UNAIDS spoke to Oleksii Kvytkovskyi, the head of the Volna Donbas Resource Center of the All-Ukrainian Association of People with Drug Addiction, a nongovernmental organization working with people who inject drugs in Ukraine.

How are you feeling Oleksii?

I am tired of fear and fleeing. I have decided I will carry on doing what I have been doing for the past 14 years—defending the rights of key communities, notably people who inject drugs and people in need.

This is not your first encounter with war?

Eight years ago, I was there when the Russian Federation attacked the eastern part of Ukraine—as you know, they are now self-proclaimed republics. I have three children and two were born during that conflict, one in 2014 and the other in 2019.

I still work in four cities in the Luhansk oblast (region), which are controlled by the Ukrainian Government, located almost on the front line: Severodonetsk, Lysychansk, Rubizhne and Kreminna.

What are you currently doing in your job?

We at the nongovernmental organization receive and then deliver opioid substitution therapy (OST) and food and water to those who need it. We only have enough OST until the month’s end. That’s about 28 days, and then I don’t know what we will do.

Access to antiretroviral therapy is also problematic in some cities. Basically, we look at who lacks what and if there are risks of interruption.

Have a lot of people left your area?

Very few people can leave because they don’t have enough funds to do so. Until now they have been evacuating women, small children and the elderly as a priority.

Our nongovernmental organization turned to international organizations and we received assistance from the Eurasian Harm Reduction Network, the Eurasian Network of People who Use Drugs and Volna, and that has really helped to provide urgent assistance.

What about you?

I begged my wife to take the children and leave for Lviv. I even found a place for them to live but she said that she wouldn't leave me, and so she stayed.

But I am afraid. I am anxious about my children and my beloved wife.

What keeps you going?

I go to work every day. People ask me if I fear for my life. My answer to this is, “When you solve someone’s problems, you unknowingly forget about fear and war. Then solving the problem of a person from the community becomes the key objective for you, so you set out to help in any way.”

UNAIDS is deeply saddened at the death of Paul Farmer

GENEVA, 11 March 2022—UNAIDS is deeply saddened at the death of Paul Farmer, anthropologist, doctor and global health champion. He was Kolokotrones University Professor and Chair of the Department of Global Health and Social Medicine at Harvard Medical School, Chief of the Division of Global Health Equity at Brigham and Women’s Hospital in Boston and co-founder of Partners in Health.

“Paul Farmer fought for social justice and human rights and passionately believed in the right to health for all,” said Winnie Byanyima, the Executive Director of UNAIDS. “His work saved millions and showed us the way to reach health care with dignity.”

Partners in Health, a social justice organization founded more than three decades ago, establishes long-term relationships with sister organizations based in settings of poverty. Its main goal is to bring the benefits of modern medical science to those most in need.

In 2000, Mr Farmer and colleagues proved that community-based approaches to HIV treatment in poor settings worked. In 2000, an estimated 4.7 to 8.9 million African children aged 0–17 years had lost one or both parents due to AIDS and HIV had become the world’s leading infectious cause of death among adults with more than 90% of those deaths occurring in low- and middle-income countries. Many had argued that the high cost of antiretroviral medicines (more than US$ 10 000 annually) and the lack of health infrastructure would mean that progress against AIDS would be impossible, but Mr Farmer and his team proved them wrong. His pilot HIV treatment programme in a poor community in rural Haiti that relied on an existing tuberculosis-control infrastructure showed that positive results could be made among people with advanced HIV. 

Mr Farmer also advocated that HIV treatment could reinvigorate HIV prevention programmes and argued that, from his experience in Haiti and Rwanda, the rollout of effective antiretroviral therapy lessened HIV-related stigma and discrimination. 

In 2012, Mr Farmer and his team celebrated the fact that almost 10 million people living in low- and middle-income countries were on antiretroviral therapy. Later, he focused on people dying of hepatitis C, like HIV a treatable and preventable disease, and regretted that at the time of his death nearly 10 million people living with HIV still did not have access to treatment.  

In late November 2021, Mr Farmer joined a virtual UNAIDS panel ahead of World AIDS Day. He stressed that all human lives have the same value and that everyone has the inalienable right to be healthy and to fulfil their potential. Drawing parallels between COVID-19 and HIV, he said, “Inequality is a major driver of pandemics in general. As with AIDS as with structural racism, gender inequality and various forms of social marginalization, active processes continue to structure risk for COVID-19 and also for the fruits of science that have been marshalled to fight it.”

UNAIDS is saddened by the death of Prof Paul Farmer, a passionate advocate for HIV treatment, who showed the world that AIDS-related deaths can be reversed with access, rights & compassion. The global health community has lost a pioneering leader, but his work will continue on. pic.twitter.com/UVS7JP8xuj

— UNAIDS (@UNAIDS) February 21, 2022

He added, “We are now living in a time of vaccine apartheid ... were we to have had a vaccine for HIV, it would be a similar challenge. So, it is, in fact, not two different pandemics posing two discreet sets of challenges but two colliding pandemics.”

As Mr Farmer repeated over and over again during his life, it is our collective duty to take the steps needed to tackle inequalities. UNAIDS, in its 2021 World AIDS Day report, Unequal, unprepared, under threat: why bold action against inequalities is needed to end AIDS, stop COVID-19 and prepare for future pandemics, warned that if the transformative measures needed to end AIDS are not taken, the world will also stay trapped in the COVID-19 crisis and remain dangerously unprepared for the pandemics to come.

Partners in Health has organized an online memorial service at 10:00–12:00 Eastern Time (16:00–18:00 Central European Time) on 12 March 2022 to honour his work.