Despite the existence of human rights obligations and policy commitments, HIV-related stigma and discrimination continues to be widespread around the world and in all sectors of society.

Following a call from civil society in 2017 to accelerate and scale up action to address stigma and discrimination, UNAIDS, UN Women, the United Nations Development Programme and the Global Network of People Living with HIV (GNP+) agreed to co-convene the Global Partnership to Eliminate All Forms of HIV-Related Stigma and Discrimination.

The global partnership was launched on 10 December on the 70th anniversary of the adoption of the Universal Declaration of Human Rights, during an event in Geneva, Switzerland. The panel of people speaking at the event included Phanpob Plangprayoon, the Deputy Permanent Representative of Thailand to the United Nations Office and other International Organizations in Geneva, Dan Namarika, the Secretary for Health of Malawi, Raquel Duarte, the Deputy Minister of Health of Portugal, and Simran Shaikh, a community representative to the UNAIDS Programme Coordinating Board (PCB).

The panellists presented programmes that have proved to be effective in reducing HIV-related stigma and discrimination in the areas in which the global partnership will focus—health care, schools, the workplace, the family, justice systems and emergency and humanitarian settings.

“This partnership aims to translate Member States’ commitments into well-resourced programmes that are proved to work and that can result in the enjoyment of HIV-related rights for all,” said Michel Sidibé, Executive Director of UNAIDS.

“The Global Network of People Living with HIV is pleased to be a co-convenor of this critical and ground-breaking global partnership that seeks to transform our communities’ best strategies for addressing and measuring HIV-related stigma and discrimination into actionable and accountable global targets and goals,” said Javier Hourcade Bellocq, GNP+ Board Chair.

People living with HIV, adolescents, young people and key populations experience discrimination, including discrimination based on their gender and gender identity, race, ethnicity, age, drug use, sexual orientation and migration status. These added layers of stigma and discrimination increase their vulnerability to HIV and undermine their rights, including the right to health, work and education.

At the end of the event, the UNAIDS PCB nongovernmental organization delegation called on Cosponsors, Member States, civil society, key populations, communities and partners to join the global partnership and lead and support concrete country actions and investments to end HIV-related stigma and discrimination.

Iryna Borushek recently passed away in Kyiv, Ukraine, after a long illness. With her passing, the international AIDS community has lost one of the strongest and most dedicated activists and leaders.

One of the highlights of my career in the AIDS response and my work with UNAIDS has been the honour to know and work with Ms Borushek.

For the past 20 years, she was one of the most articulate and passionate civil society activists, advancing the national AIDS response in Ukraine and inspiring AIDS responses across eastern Europe and central Asia.

Beginning in the late 1990s, Ms Borushek was one of the earliest activists who defended the rights of people living with HIV at a time when an HIV-positive diagnosis was tantamount to a death sentence. People living with HIV were just beginning to learn about access to treatment, and Ms Borushek was among only a few people in the region who openly disclosed their HIV status.

For Ms Borushek and other early activists, those years were very challenging. It required incredible bravery, faith in one’s strength and a fierce optimism that speaking up and acting up will save lives and change the future. Ms Borushek had all of those qualities and thankfully she demanded all of us to demonstrate at least some of those same qualities every day.

In 2001, she helped to found the All-Ukrainian Network of People Living with HIV. Thanks to her tireless energy and commitment to community activism, the All-Ukrainian Network of People Living with HIV is now one of the most powerful civil society organizations, not only in Ukraine, but globally.

Throughout her career she continued her studies, first at the Odesa University of Economics, then at the Socium School, as well as through study opportunities and internships in Poland, Germany and the United States of America on how to implement evidence-informed programmes for substitution therapy, health systems strengthening and support for people living with HIV, in particularly for injecting drug users.

Ms Borushek was recognized as one of the brightest activists in this new area, uniting civil society leadership with governance and the urgent, life-saving scale-up of antiretroviral therapy.

Ms Borushek quickly became an international symbol of Ukraine’s bold HIV activism. Together with Vladimir Zhovtyak, she participated in the first United Nations General Assembly Special Session on HIV/AIDS, in June 2001. In subsequent years, she took a leadership role in many international AIDS forums. As a member of the eastern Europe and central Asia delegation to the board of the Global Fund to Fight AIDS, Tuberculosis and Malaria from 2004 to 2009, she supported and advocated for the Global Fund’s first grants to eastern Europe and central Asia.

Ms Borushek’s professional focus was devoted to the establishment of a new, people-centred strategy on HIV in Ukraine, the roll-out of national programmes for antiretroviral therapy and substitution therapy and HIV care and support programmes implemented by the All-Ukrainian Network of People Living with HIV and its partners in Ukraine. Every day, Ms Borushek insisted that people living with HIV should not only be fully represented in the decision-making process, but also be engaged in the implementation of programmes and services.

In 2007, she was presented with an award for leadership, partnership and commitment to the national response to HIV in Ukraine. In 2007, Ms Borushek also received an award for international women’s leadership in the response to HIV at the International Women's Summit in Nairobi, Kenya.

I will always remember as her as one of the most passionate activists who always found the time to be a precious friend. Her vision and energy continue to live on in her daughter and granddaughter, in her friends and colleagues across the world and, of course, in the principles and programmes to which she dedicated her life.

Ms Borushek’s funeral took place on 26 November in Kyiv. Words of support for loved ones and condolences can be sent to the All-Ukrainian Network of People Living with HIV.

info@network.org.ua

By Vinay P. Saldana

Director, UNAIDS Regional Support Team for Eastern Europe and Central Asia

The Paris Declaration to end the AIDS epidemic in cities has gained political momentum among city leaders to commit to ending AIDS and to address disparities in access to health and social services. To date, about 300 cities and municipalities around the world have signed the declaration.

Sponsored by USAID through the United States President's Emergency Plan for AIDS Relief, a joint UNAIDS and International Association of Providers of AIDS Care Fast-Track cities project was designed to provide essential and strategic technical support to priority high-burden cities to accelerate the AIDS response and deliver on the commitment of the Paris Declaration. Ten cities, represented by local governments, civil society organizations and development and other partners, gathered in Johannesburg, South Africa, on 2 November to reflect on experiences and lessons learned during the first year of implementation of the project.

In all 10 cities, political leadership of the HIV response has been mobilized and city health departments are actively engaged in leading the response to HIV. In addition, the projects are receiving high-level support from local and national governments, as well as national AIDS councils. In Yaoundé, Cameroon, the project has provided an opportunity to convene partners on a regular basis, under the leadership of the seven city mayors, to improve coordination of activities, address potential overlap and review progress.

The project is contributing to innovation in cities. In Jakarta, Indonesia, concept testing of mobile solutions has identified an effective and relevant approach to reaching young people and a mobile application is being developed to reach young gay men and other men who have sex with men with key messages related to HIV testing, prevention and support.

“Cities present their own unique advantages to building a multisectoral approach to HIV and can benefit from social transformation opportunities associated with a strong AIDS response. Equity, inclusiveness, resilience and sustainability are not only key to a successful health-care strategy, they are also the building blocks to a thriving city,” said Catherine Sozi, Director of the UNAIDS Regional Support Team for Eastern and Southern Africa.

Civil society is actively engaged in the 10 cities. In Kinshasa, Democratic Republic of the Congo, civil society has been active in the implementation of the project, in advocacy meetings with political leaders, national authorities and other partners, on issues related to stigma, discrimination and human rights. The Kigali, Rwanda, team highlighted the support by the project to the strategic outreach activities to provide HIV services to key populations, including distribution of more than 10 000 condoms in three different locations.

“Through the condom kiosk project with the city government, we were able to successfully reach key populations in Kigali,” said Uwase Nadège, Programme Manager of the Kigali Hope Association. “People who access these services trust others from the community, and we see this as a way to meaningfully engage with the government to Fast-Track the response.”

In Durban and Johannesburg, South Africa, the project is receiving high-level political support from local as well as national governments. In Johannesburg, the project will support the establishment of a city AIDS council, with the key goal of coordinating the HIV response in the city.

Durban, Jakarta, Johannesburg, Kigali, Kinshasa, Lusaka, Maputo, Mozambique, Nairobi, Kenya, Windhoek, Namibia, and Yaoundé are the first 10 cities participating in the project.

Surrounded by the stately centuries-old buildings of Quito’s Old City, a group of men are playing a modified game of Jenga. Each wooden brick they carefully extract from a tower corresponds to a sexual health lesson. There’s rapt attention while the peer educator demonstrates how a female condom is used. One table over, young people are gathered around for a male condom demonstration. People might stop by the tents for blood pressure or blood sugar tests, but they stay for the lively safer sex education.

This hands-on engagement is a result of collaboration between the Directors of Health and Social Inclusion for the Municipality of Quito and civil society organizations, including the Kimirina Corporation. Two years after becoming the first Andean city to sign the Paris Declaration to end the AIDS epidemic in cities, Quito has dramatically scaled up HIV testing and prevention programmes. Four hundred kilometres away, the city of Guayaquil is following suit, expanding HIV prevention and community testing.

Over the past year there has been a renewed emphasis on community testing, with concrete results. The proportion of newly diagnosed people being linked to health services has increased by a quarter in Quito and a third in Guayaquil.

“You are not just talking about the epidemic, but also using practical approaches,” UNAIDS Executive Director Michel Sidibé said during a visit to Ecuador on 30 October. “We are seeing people being educated, accessing services and getting tested. Anything we do with the support of the community is sustainable.”

This emphasis on community involvement is a key feature of the new Ecuador Multisectoral National Strategic Plan on HIV. During the plan’s symbolic launch on 30 October, Ecuador’s Public Health Minister, Veronica Espinosa, emphasized that the missions to end AIDS and to build a better society were one and the same.

“We are working to ensure a life without prejudice and the right to health for all without discrimination,” said Ms Espinsosa.

And the human rights-based approach to HIV services does not end with citizens of Ecuador. Ecuador has shown great leadership with regard to migrants, including guaranteeing health care for refugees and migrants living with HIV.

“You have opened your hands and heart to people coming from other places,” said Mr Sidibé. “By giving treatment access to people who could be left behind you are demonstrating that you set a high standard, not only for yourselves but for the world.”

A new regional civil society cooperation network for the Americas and the Caribbean to support nongovernmental organizations working to end AIDS was launched on 30 October in Quito, Ecuador. Launched by Coalition PLUS, the initiative will support coordination and capacity-building among community organizations involved in the AIDS responses of North, Central and South America and the Caribbean.

“Although we have HIV services available, people do not have access because they are criminalized and stigmatized. The community movement is helping us to end the conspiracy of silence about discrimination. We need civil society to increase efforts to achieve the progressive policies that will clear the way for us to end AIDS,” said Michel Sidibé, UNAIDS Executive Director.

Since 2014, Coalition PLUS—an international alliance of more than 100 nongovernmental organizations contributing to the AIDS response—has been building and strengthening mechanisms for regional collaboration. Such networks already exist in western Africa, central Africa, the Middle East and North Africa, the Indian Ocean and Europe.

The President of Coalition PLUS, Hakima Himmich, said that the network will increase access by organizations to new resources and approaches relevant to their local contexts. She noted that it was especially important to strengthen civil society’s capacity around addressing the needs of the most vulnerable.

“We have huge challenges around stigma and discrimination against entire populations. In order to achieve epidemic control, we must also address human rights,” said Ms Himmich.

UNAIDS data show that in 2017 key populations and their sexual partners accounted for three quarters of new HIV infections in Latin America and two thirds of new infections in the Caribbean. Gay men and other men who have sex with men and transgender women are disproportionately affected, with a few countries reporting HIV rates of above 15% among those communities.

The activities of the network in the region will be coordinated by the Kimirina Corporation, a Ecuadorian organization focused on people-centred combination prevention and advocacy. Amira Herdoiza, Director of the Kimirina Corporation, explained that the platform will place strong emphasis on coordinated research, skills-building and advocacy, particularly around issues affecting young people and key populations. 

“We need more multicountry research to show the nuances of our epidemics,” Ms Herdoiza said. “Through this network our organizations’ capacities to share and analyse data will be strengthened. We will also focus on sharing experiences and planning joint programmes.”

At present, there are three other members of the regional network: the Coalition of Quebec Community Organizations against AIDS in Canada; AIDES in the French Caribbean; and the Institute for Human Development in the Plurinational State of Bolivia. Other regional organizations are invited to be part of the initiative.

Sitting on center stage, clutching a microphone, Chinmay Modi along with a dozen young people answered questions about HIV during an all-youth panel session at the Amsterdam 2018 AIDS conference.

The 25-year-old born with HIV described his struggle accessing services. "In India, sex is a big taboo. A 16-year-old cannot buy condoms for example and parents need to give consent to be tested for HIV." He said educating children and parents is key. His greatest desire involves pushing for specific youth-focused services.

Dany Stolbunov from Ukraine echoed that sentiment, saying "Nothing for us, without us." He said that in his region stigma and discrimination kept people from even accessing services. He bemoaned the fact that young people in Ukraine have limited information and are not seen as a priority.  

HIV FACTS

In 2017, there were approximately 250 000 new HIV infections and 38 000 AIDS-related deaths among adolescents and 1.8 million adolescents living with HIV globally.

Adolescent girls in sub-Saharan Africa are disproportionately affected by new HIV infections, making up 56% of new HIV infections among adolescents globally.

HIV is a leading cause of death among adolescents (10-19 years).

"We are ready to fight for our rights," he added, explaining that young people have a voice and want to use it.

Bruna Martinez strongly believes that broad sexual education discussing gender, health issues and pleasure would not only limit stigma, it would also make teenagers fear HIV less.

"HIV should not be in a vacuum," she said. "We are a generation that can discuss sex and that's a great thing; so give us the tools that tip things in our favor."

All agreed that teenagers and young people have the most at stake in ending the HIV epidemic. Their demand is clear: go beyond scholarships by empowering us.

Melodi Tamarzians, the Dutch youth ambassador for sexual and reproductive health and rights, said, "Do not tick the youth box by giving us a token position." In her view, to enable young people, adults need to invest in them and give them advisory roles.

AIDS 2018 prided itself on giving a greater space to young people in Amsterdam. Youth and junior investigators made up more than one-third of the submissions presented at the conference, according to the conference organizer, the International AIDS Society (IAS.) In addition, young people got the most scholarships than at any other conference. And the Global Village (a free admission space by the conference area) featured the largest space conceived of and run by young people. It included a snack area, a mini-indoor football field, a safe-space theater area and youth-led activities, and booths such as a radio recording area, a youth against AIDS t-shirt stand and even an exhibit about the vagina.

Ms Martinez volunteered and then worked with the Amsterdam Youth Force that mobilized and organized other young people to make the youth space their own. "At this conference, we showed everybody that we could deliver," she said.

She hopes that this meaningful youth presence will carry over. "It's important that we are not being catered to but rather that we are recognized," she said, her AIDS 2018 lanyard laden with pins and stickers. She sees her recent stint with the Youth Force as a way to change things. "There are still so many young people getting infected with HIV and dying. It means we are failing and the system is not working," Ms Martinez said. In her view, HIV policy has to also come from the ground upwards. She emphasized peer-to-peer education and valuing local knowledge. Standing in front of a huge 'Let's face HIV together' she said, "We speak the language of the young people and we know what we are living, so acknowledge us fully."

Maria Godlevskaya, a courageous community activist living with HIV from the Eastern Europe and Central Asia region, was the only Russian language speaker at the opening of the 22nd International AIDS Conference, AIDS2018. 

"We all deserve high-quality treatment, regardless of sexual orientation, beliefs and religious preferences. We all deserve a quality life with HIV and without it. For many people, stigma and discrimination remain the main barriers to access support to preserve their health and the health of their loved ones." said Maria Godlevskaya in her opening remarks at AIDS2018. "I believe in the community. As an indestructible link in the chain of resistance, I have defended, defend and will defend the rights of people living with HIV to have full quality of life and a high standard of living. I encourage everyone to support our campaign "Chase the virus, not people!" #chasethevirusnotpeople

Maria has been living with HIV for over 18 years. She openly speaks about her HIV status on television and openly shares her personal story with journalists. Maria leads a team of peer counselors and runs a video blog at E.V.A. - the first Russian network to support women affected by HIV. She shares her personal experience and disseminates the latest HIV news and information with people affected by the epidemic across Russia every day.

"Some people call me and others reach out to me via social media. I try to respond to every request. I think my life has changed dramatically and now I have found my purpose in life. It is priceless to be able to communicate with people around the world.”

Maria was diagnosed with HIV when she was 16 years old. "When you are 16, there is no panic. You are not frightened by horror stories about AIDS and not bound by social rules, so it was not hard for me to accept my HIV diagnosis. I was more worried about my mother. My diagnosis was like litmus paper - people who were afraid of HIV abandoned me, but the most trusted ones have remained forever.”

Maria has been working for different HIV organizations for many years, starting with providing counselling for people who were using drugs and living with HIV. "At that time there were no well developed communities to support people who use drugs. We helped those in remission to start treatment and stay adherent to treatment."

A few years ago, Maria became pregnant and gave a birth to a healthy baby. "When I met the father of my child, I immediately told him about my "peculiarity” and left him to choose to stay with me. And he gave me a beautiful answer: ‘Every person has something special’ he said.  So we stayed together, and he remained HIV negative.”

I stayed on HIV treatment throughout and after my pregnancy, and I was lucky to have a great relationship with my doctor. My pregnancy and birth is now an example for other women living with HIV. Today I get lots of questions from young Russian women about pregnancy, health care, obstetrical care for women with HIV, so I can share with them my positive experience.”

Maria’s organization, E.V.A. implements many projects in Saint Petersburg and across Russia, focused on providing HIV services for women and their families: support groups for women living with HIV and their families; trainings to increase medical literacy among people living with HIV, and help for women to communicate and negotiate with their doctors and care givers.

"Our trainings help women to adhere to treatment, minimize side effects, and manage undesirable consequences. We empower women to enhance their physical condition as they get used to taking ART long-term. We also support peer consellors so they can provide other women with moral and psychological support.”

Maria considers the main challenge of the growing HIV epidemic among women in Russia is that women have received little sexual education, lack a culture of safe and equal sexual relations and experience irregular monitoring of their HIV status. Many women simply do not identify themselves with any key population, and consider that having one regular sexual partner will safeguard their health. 

"Now we are seeing so many new HIV infections among women over the age of 50 - which brings new challenges as how to support these women. When a woman in her thirties learns her HIV positive status, she may understand how she acquired it. But women in their fifties or sixties are often shocked to learn they have HIV and they often think that their lives are over. In such cases, peer counsellors are so important because they can answer practical questions from their own personal experience.”

“I have a clear set of goals: I know why I'm doing what I do, and I have the energy and strength. I try to set real goals and don’t try to save the whole world – I’m just supporting those who really need help.”

Western and central Africa has faced many challenges, from conflicts and humanitarian crises to political instability and the devastating Ebola epidemics. At a time when the global response to HIV is accelerating, millions of people in the region are being left behind. Globally in 2016, 70% of all people living with HIV knew their HIV status, 53% of all people living with HIV were accessing treatment and 44% of all people living with HIV were virally suppressed. In contrast, the western and central African region lags behind, achieving only 42%, 35% and 25%, respectively, in 2016. The gap is considerable in that region: 4.0 million people living with HIV are not receiving treatment and 310 000 adults and children died from AIDS-related illnesses in 2016.

In order to share experiences, challenges and information on successful programmes, representatives of civil society organizations involved in the AIDS responses across western and central Africa gathered in Somone, Senegal, from 7 to 10 May. Technical and financial partners also took part in the discussions.

“Eighty civil society leaders from 17 countries in western and central Africa are eager to take up a central role in the implementation of the western and central Africa catch-up plan as actors of social change and political transformation,” said Patrick Brenny, the Director of the UNAIDS Regional Support Team for Western and Central Africa.

The participants developed innovative solutions to overcome barriers to national AIDS responses and to improve the unity and collaboration of local civil society organizations. They examined progress and setbacks in the implementation of national catch-up plans and shared experiences of violations of human rights related to HIV status and stigma and discrimination.

Consensus emerged that efforts should be focused on bridging the gaps in paediatric care and treatment, in particular in the context of the lack of social protection schemes for orphans and other children made vulnerable by AIDS. The region has seen a worrying trend in increasing mortality among adolescents living with HIV. Lack of access to comprehensive sexuality education, a high age of consent to access sexual and reproductive health information, services and treatment without parental agreement and taboos around youth sexuality were raised as some of the obstacles to be overcome.

Successful innovations and programmes with key populations and other vulnerable groups were shared. There was wide consensus about the role of community health systems to reach remote populations and vulnerable groups, while protecting confidentiality.

“It is high time that we increase investments to guarantee access to antiretroviral medicines, have better paediatric medicines, implement family testing approaches and scale up social protection programmes to protect all vulnerable mothers and children,” said Christine Kafando, Coordinator of the Hope for Tomorrow Association in Burkina Faso.

The participants will build on the progress made by organizing national dialogues around the catch-up plan for the region. The development of a regional platform for advocacy and technical support will be further discussed to enable stronger and more resilient civil society to play roles in national AIDS responses and other global health challenges.

“Each stakeholder gathered here plays a central role in their respective national AIDS response. Each brings invaluable experience to the table. We need to build on this energy to renew our commitment to work together for much needed breakthroughs for the region to bring HIV under control,” said Daouda Diouf, the Executive Director of ENDA Santé in Senegal.