People living with HIV

Absamov Mannap Kamilovich works as a peer consultant in a primary health-care clinic in the city of Osh, in southern Kyrgyzstan. Mr Absamov injected drugs for more than 20 years, but, after a period of community-based treatment, stopped injecting and started a new life.

After taking an HIV test in 2013, Mr Absamov was asked to work as a peer consultant for a newly formed multidisciplinary HIV team.

In 2014, the first multidisciplinary HIV teams started work in southern Kyrgyzstan. They include a specialist in infectious diseases or a family doctor, a nurse and a peer consultant. The teams aim to improve the quality of medical and social services for people living with HIV and their families and are based in local health clinics.

The multidisciplinary HIV teams are supported by a grant from the Russian Federation through a regional cooperation programme that is implemented by UNAIDS in partnership with the Araket Plus nongovernmental organization. Ten multidisciplinary HIV teams have now been formed in Kyrgyzstan.

Mr Absamov works with up to seven clients a day, who go to a local clinic where they can access a comprehensive package of medical services.

Mr Absamov says that initially many people were afraid to visit the clinics, as they feared stigma and discrimination from medical personnel. “I had to persuade them, explain that it is possible to get all the medical services they needed at the local clinic.”

Ainagul Osmonova, the project manager, believes that people living with HIV have developed a genuine trust for their peer consultants.

The teams have helped to get people living with HIV on antiretroviral therapy. In 2013, only 285 people newly diagnosed with HIV started antiretroviral therapy. With the support of the multidisciplinary HIV teams, by the end of 2017 that number had increased to 885 people.

The peer consultants help the teams to recruit people living with HIV into the programme and to provide them and their families with access to social support services, which includes a psychological help desk for families and children affected by HIV. The peer consultants are in close contact with family members of people living with HIV and community organizations.

The multidisciplinary HIV teams work in close contact with the AIDS Centre in Osh. By moving many services for people living with HIV to the clinics, the role of the AIDS Centre has changed to focus more on coordination, training and seminars for general practitioners and the clinics’ medical staff.

According to the UNAIDS Country Director in Kyrgyzstan, Meerim Sarybaeva, the transfer of the AIDS Centre’s services to the primary health-care level has increased the overall coverage of clients enrolled in HIV treatment, care and support programmes. “Our experience shows that we should not be afraid of change. All people living with HIV and members of their families need to be able to access services where they live and be able to receive them freely, without experiencing stigma and discrimination,” she said.

Mr Absamov says he enjoys his job. Thanks to him, many people living with HIV have stopped using drugs, have started antiretroviral therapy and adhere to their treatment.

A new US$ 30 million partnership to help end cervical cancer led by the United States President’s Emergency Plan for AIDS Relief (PEPFAR), the George W. Bush Institute and UNAIDS will accelerate life-saving efforts in eight African countries.

Studies show that women living with HIV are four to five times more likely to develop invasive cervical cancer. However, the disease is preventable through screening and early treatment of precancerous lesions. Early detection and treatment of cervical cancer can dramatically increase a woman’s chance of survival—women with preinvasive lesions have a five-year survival rate of nearly 100%.

Because of the high prevalence of HIV in sub-Saharan Africa, and because women in sub-Saharan Africa are not screened or treated as early or frequently as women in other parts of the world, cervical cancer remains the number one cancer killer of women in the region.

To address the disproportionate risk of cervical cancer among women living with HIV and the need for increased rates of screening and treatment in sub-Saharan Africa, PEPFAR the George W. Bush Institute and UNAIDS recently announced a new partnership—the Partnership to End AIDS and Cervical Cancer—designed to effectively eliminate cervical cancer deaths among women living with HIV in sub-Saharan Africa within a generation. The partnership will build on successful efforts over the past seven years of the Pink Ribbon Red Ribbon initiative and, pending Congressional approval, will be supported by an initial investment of US$ 30 million from PEPFAR.

“When we confront suffering—when we save lives—we breath hope into devastated populations, strengthen and stabilize society, and make our country and the world safer,” said President George W. Bush. “This week, we are announcing the next phase of our partnership with the United States President’s Emergency Plan for AIDS Relief and UNAIDS: a plan to effectively eliminate cervical cancer amongst HIV-positive women within a generation.”

The partnership will focus its work in eight sub-Saharan African countries where the burdens of HIV and cervical cancer are high—Botswana, Lesotho, Malawi, Mozambique, Namibia, Swaziland, Zambia and Zimbabwe. There are about 6 million women living with HIV in those eight countries. More than 100 000 women are diagnosed annually with cervical cancer in sub-Saharan Africa.

“The partnership will allow us to screen for, and treat, precancerous lesions among women living with HIV like never before,” said Michel Sidibé, the Executive Director of UNAIDS. “The partnership’s new strategy, which includes cervical cancer screening every two years for women living with HIV over the age of 30 years, aims to reduce cervical cancer incidence by 95% among this population in eight sub-Saharan African countries.”

The partnership will engage with governments in each of the countries to ensure that women and girls living with HIV are a priority in national cervical cancer prevention and control programmes. It will also leverage the powerful advocacy of first ladies, ministers, civil society, global health leaders and funders to improve implementation efforts and speed progress against the goal of eliminating cervical cancer.

“Thanks to the generosity of the American people, the United States President’s Emergency Plan for AIDS Relief has saved the lives of millions of HIV-positive women around the world,” said Deborah Birx, United States Global AIDS Coordinator and Special Representative for Global Health Diplomacy. “We must ensure these same women—mothers, daughters, aunts, and grandmothers—who are living with HIV and thriving do not succumb to cervical cancer.”

The new partnership builds on the successful efforts of the Pink Ribbon Red Ribbon initiative. Since its inception in 2011, Pink Ribbon Red Ribbon and its partners have screened more than half a million women for cervical cancer in Botswana, Ethiopia, the United Republic of Tanzania and Zambia, treated almost 32 000 women for precancerous lesions and vaccinated almost 150 000 girls aged 9–13 years against human papillomavirus type 2.

Women living with HIV in Rajasthan, India, have come together to lobby the State Government of Rajasthan for improved provision of social protection services. The Global Alliance for Human Rights and the Rajasthan Network of People Living with HIV organized an advocacy session in Jaipur on 15 May with more than 100 women living with HIV during which they presented their needs, including dairy booths for income generation and schooling for adolescents living with HIV.

In addition to the importance of access to social protection and economic opportunities, discussions were also held around the global 90–90–90 targets, the elimination of mother-to-child transmission of HIV by 2020 and ending AIDS by 2030. The Indian HIV/AIDS Act 2017 and its importance in protecting against discrimination and opening access to the law in the event of human rights violations against people living with and affected by HIV in India were also discussed.

The women living with HIV presented some heartening real-life stories on their struggle to look after their families. A widow with three children said, “I am facing stigma and discrimination in my family and I am fighting hard to ensure that my rights to property are protected so that I can continue to provide good care to my children. I am under a lot of pressure to withdraw, but I will not give up the fight.”

Many commitments were made during the session. “We commit ourselves to look for legal clearance in support of the allocation of dairy booths for 1000 women living with HIV in Rajasthan,” said Devi Singh Bhatti, a politician and former member of the Rajasthan Legislative Assembly.

Brijesh Dubey, of the Global Alliance for Human Rights and Rajasthan Network of People Living with HIV, concluded the event with a strong message to the officials of the Government of Rajasthan and other stakeholders present. “The Rajasthan Network of People Living with HIV will continue to focus its efforts on two major areas—firstly, the roll-out of the HIV/AIDS Act 2017 through the establishment of legal clinics and, secondly, ensuring access to quality livelihood options for people living with HIV, especially women and adolescents living with HIV.”

The UNAIDS Executive Director, Michel Sidibé, has completed a five-day visit to three countries in southern Africa. The mission included high-level political discussions, the launch of the Lesotho HIV health and situation room and a frank and open dialogue with women activists about how to address sexual harassment and abuse.

Beginning in Lesotho, Mr Sidibé attended the launch of the HIV health and situation room with the Deputy Prime Minister, Monyane Moleleki. Special guest Naomi Campbell was invited by UNAIDS to join the two-day country visit to learn more about the HIV response.

The Lesotho HIV and health situation room shows real-time service delivery data, producing a comprehensive picture and understanding of Lesotho’s HIV epidemic. It enables quick feedback on results at the national and community levels and identifies bottlenecks in access to health-care services.

“The launch of the Lesotho HIV and health situation room gives us access to data to shape impactful and efficient health programmes. These are the kind of innovations that will bring services to those who need them most and ensure that no one is left behind by the AIDS response,” said Michel Sidibé, the UNAIDS Executive Director.

On the eve of the launch, Mr Sidibé and Ms Campbell visited the Queen II Hospital in Maseru, Lesotho, and met with young women living with HIV and others affected by the epidemic.

“I commend the Government of Lesotho and its partners for the progress made in the AIDS response. But the work is far from done. The reality is that we are not reaching adolescent girls and young women. I leave Lesotho today empowered, inspired, encouraged and determined to do all I can to highlight this critical issue,” said Ms Campbell.

In South Africa, Mr Sidibé addressed the Pan African Parliament and underlined the importance of integrated health approaches that were people-centred. He urged parliamentarians to commit more domestic funding for health services to increase the sustainability of the AIDS response and to put in place more preventative measures to improve people’s health. In addition, he called for laws to protect women and vulnerable groups. 

Mr Sidibé left the parliamentary session to meet civil society activists concerned by UNAIDS' response to allegations of sexual harassment and abuse in the organization.

At a follow-up meeting the next day, Mr Sidibé and women activists met to discuss their concerns.

Mr Sidibé agreed with activists to issue a statement following the meeting. The statement begins:

‘During my recent visit to South Africa, I listened carefully to you, I heard you. The HIV epidemic is inextricably linked to sexual and gender-based violence and the two can never be separated. We need the passion of advocates to move issues forward.`

During his visit to South Africa, Mr Sidibé held separate meetings with the President, Cyril Ramaphosa, the Deputy President and South African National AIDS Council Chair, David Mabuza, and the Minister of Health, Aaron Motsoaledi. They discussed plans to increase the number of people on treatment by 2 million by 2020 and the need to empower local and provincial authorities to bring treatment and prevention services closer to vulnerable communities.

The last leg of Mr Sidibé’s visit saw him arrive in Lusaka, Zambia, to confer the 2018 UNAIDS Leadership Award upon Kenneth Kaunda for his efforts in strengthening the AIDS response.  

When Robinah Babirye was at boarding school, her secret was difficult to hide. Sleeping in an all-girls dormitory, everyone knew everyone else’s business, especially around bedtime. “It was hard to bring out my medicine,” she said. “It would raise questions.”

Ms Babirye and her twin sister were hiding their HIV-positive status. Before starting at boarding school, the daughters and their mother would take their medicine daily at 10 p.m., and that was all there was to it.

Once she enrolled at university in Kampala, Uganda, in 2013, hiding became more difficult. Her room-mate was suspicious and spread rumours. Having been born with HIV, she couldn’t help feeling that life was unfair.

“At the time, I hadn’t accepted that I was living with HIV and that I had to live with it for the rest of my life,” said Ms Babirye. She described years and years of avoiding ever speaking to anyone about her regular visits to the clinic or about taking treatment. Then her mother died from cancer and she didn’t know how to cope.

Glancing above her eyeglasses, she added, “When I saw my mother fighting, it gave me strength, but when she died that became a terror.”

Ms Babirye more or less gave up. She stopped taking her medicine and drifted.

Asia Mbajja, founder and director of the People in Need Agency (PINA), a nongovernment organization for young people living with HIV in need, described appeals from distraught teenagers. She had helped many of them as children while working as a treatment coordinator at the Joint Clinical Research Centre children’s clinic.

“I kept promising them that life would change and get better, but as they grew up, their needs changed,” she said. “I needed to do something that would make a difference.”

In 2012, Ms Mbajja quit her job to start PINA. Among her first clients was Ms Babirye, whom she has known since the age of 10. She hammered over and over the importance of taking the daily dose of antiretroviral therapy.

“The problem is that all of Asia Mbajja’s upbeat encouragement would come tumbling down once she was no longer around,” Ms Babirye said. The young woman felt defined by HIV.

“When you're told that you have to take medicine for the rest of your life, coupled with the rumours and stigma, I feared I would forever be stuck,” she said. “Despite living with HIV, I am still a woman with feelings.”

Through her involvement with PINA, in 2014 Ms Babirye travelled to the International AIDS Conference in Melbourne, Australia. The young woman felt elated to discover a world where her status seemed a non-issue, but upon her return she couldn’t help feel like there was a line she could not cross.

Ms Babirye felt tired. She wavered between ending her life and changing her life for good.

Donning an I am HIV Positive t-shirt she posted a photograph of herself on Facebook. “My heart started to beat so fast, I couldn't bear to see the comments,” she said. She paused and let out a gasp and said, “I was expecting a lot of negativity, but the comments were largely positive.”

Her twin sister, Eva Nakato, couldn't believe what she had done. After some thought, she decided she couldn’t let her sister fight alone, so she also disclosed her status.

“When people said we need more people like her it motivated us,” said Ms Nakato.

One of the first people to congratulate the twins was Ms Mbajja. Ever since, the duo have been at the forefront of PINA, testifying, mentoring and singing. Ms Nakato explained that at the children’s clinic they used to sing as a group, and at PINA they brought it to a whole new level.

“We started using music to convey HIV awareness messages," she said. Songs like Never Give Up, Yamba (Help) and ARV. Their latest projects now include launching a television series around HIV and relationships and documenting gender-based violence.

“When we met survivors of sexual abuse, that pushed me to make a movie,” Ms Nakato said, adding that videos and music can get messages across.

Ms Babirye finished her university degree last year and dreams of independence. 

In the long term, she said her vision is a generation that is AIDS-free and stigma-free. “To accomplish an AIDS-free world, each individual has a responsibility to do something and break down cultural and societal barriers,” she said.

Discrimination in health-care settings is one of the major obstacles to ending the AIDS epidemic as a public health threat by 2030. Evidence shows that discrimination in health-care settings is widespread across the world, seriously reduces the quality of life of people who experience it and impedes the use of health services, thus preventing people exercising their right to health.

In order to accelerate action to end discrimination in health-care settings, the UNAIDS Programme Coordinating Board—during its 41st meeting, which took place in Geneva, Switzerland, from 12 to 14 December—reviewed the available evidence of the effects of discrimination in health-care settings on the efforts to reach the global HIV prevention and treatment targets and identified programmatic actions to end such discrimination.

Often driven by stigma, discrimination in health-care settings may be manifested when an individual or group is denied access to health-care services that are otherwise available to others, or when care, treatment and/or medical procedures are refused or delayed on a discriminatory basis.

Evidence provided during the meeting shows that discrimination in health-care settings excludes or deters people from seeking health services for fear of stigma, judgemental attitudes or lack of confidentiality. It acts as a barrier to reaching the 90–90–90 targets and has negative impacts along the continuum of care, which encompasses HIV prevention, testing, treatment and sustained viral load suppression.

Where people cannot or will not access health services, they are less likely to be tested for HIV at all, let alone in a timely manner to ensure that they benefit from the early initiation of treatment. Similarly, where people living with HIV do initiate treatment, discrimination can lead to them being lost to follow-up and less likely to adhere to treatment.

Furthermore, health workers are also subject to the same drivers of discrimination as others, including negative attitudes towards people living with HIV, key populations and women and girls. Health-care provider surveys in Thailand reveal that attitudes about HIV among health facility staff may prevent them from adequately caring for people living with or affected by HIV. The attitudes include notions that HIV is a punishment for immoral behaviour, that most people living with HIV do not care if they infect other people and that it can be appropriate to sterilize a woman living with HIV, even without her consent. In some cases, health workers explicitly state that they would prefer not to provide services to members of key populations.

Solving these challenges and eliminating discrimination in health-care settings requires the implementation and scale-up of focused, coordinated, time-bound, evidence-informed, multisectoral actions.

The participants at the meeting agreed upon a set of programmatic approaches to reduce discrimination in health care, including the following:

• Programmes and other measures to eliminate discrimination in health-care settings must be based on the evidence. Discrimination must therefore be monitored, measured and tracked. In particular, it is important to gauge both the experiences of service users and the attitudes and practices of service providers, as well as to monitor the existence and implementation of national-, local- and facility-level non-discrimination policies.
• As part of a comprehensive strategy to eliminate discrimination in health-care settings, countries should provide pre-service and in-service education to the health workforce. This allows health workers to develop human rights and gender equality competencies and strengthens the understanding of medical ethics and workers’ rights, roles and responsibilities in relation to discrimination in health-care settings.
• Countries should review and strengthen laws to prohibit discrimination in the provision and distribution of health services and provide access to remedies for individuals whose rights have been violated, as well as penalties for the perpetrators. Eliminating formal discrimination rooted in laws and policies is one part of the solution. However, states must also put in place measures that protect people living with HIV and members of key populations in and beyond health-care settings.

The participants agreed that addressing stigma and discrimination, including in health-care settings, is a fundamental requirement for achieving the Fast-Track Targets set for 2020 and the promise of the 2030 Agenda for Sustainable Development of leaving no one behind.

Aisha Abdallah never misses her regular medical appointments at the Zanzibar Youth Education, Environment, Development Support Association (ZAYEDESA) care and treatment centre for HIV, located on the outskirts of Stone Town, Zanzibar.

She was diagnosed with HIV in 2006. “I went with a group of friends to get tested. I was keen to know my status because of my lifestyle. And I tested HIV-positive,” she says.  

Ms Abdallah is engaged in sex work. “I was in a steady relationship with the father of my daughter,” she says. “But when he started to mistreat me, I had to run away from the Tanzania mainland to Zanzibar and find a way of living alone.” She says she often cries at the thought of leaving her daughter behind.

ZAYEDESA runs the only community-based HIV clinic in Zanzibar. Ms Abdallah found out about the new clinic in 2014 from a community outreach worker and a former sex worker. “In the first care and treatment centre where I used to go, I was treated like a kid and not getting the services which I needed. At ZAYEDESA, health-care workers talk to me in a friendly manner and understand my concerns,” she says. At the centre, she has also benefited from tuberculosis screening and treatment and family planning services, including condoms. “I trust the clinic. I know if I get ill I can get good service there.”

ZAYEDESA has established four youth-friendly health centres on both islands of Zanzibar, Unguja and Pemba, an anonymous toll-free AIDS helpline and a text message service to deliver HIV and sexual and reproductive health information. It is at the centre of the community-based AIDS response in Zanzibar and plays a critical role in offering stigma and discrimination-free services to key and vulnerable populations.

Stigma remains one of the major obstacles to accessing prevention, treatment and care services in Zanzibar. Ms Abdallah would like to pass on one message, “I want people to understand that HIV can affect anyone, anywhere.”

Ms Abdallah, who prefers not to use her real name, is on life-saving HIV treatment. “I know the importance of adhering to my antiretroviral treatment. My mum is very supportive, she calls me every day to check on me and remind me about the medicines.”

UNAIDS has supported the refurbishing of youth-friendly centres managed by ZAYEDESA. Currently, UNAIDS provides support to ZAYEDESA to ensure its meaningful participation in the development, implementation and review of the United Nations Joint HIV Plan in Zanzibar and on supporting its resource mobilization efforts.

Suhaila Msham Mwarimwana is 19 years old and lives in Zanzibar City. She was born with HIV and lost both parents before she was nine. But, despite the difficulties she faces, she is an inspiration for other adolescents and children living with HIV. 

“When I was about 12, I overheard neighbours saying I was HIV-positive. So I asked my oldest sister and she told me I had a bone-related disease,” she says. “But I sensed this was not the truth, so after some time I insisted and she took me to the Zanzibar Association of People Living with HIV/AIDS and I discovered my HIV status.”

Ms Msham Mwarimwana says her first thought was for her youngest brother, who also tested HIV-positive. She felt hopeless and desperate. “I thought HIV was a death sentence,” she says.

At a Zanzibar Association of People Living with HIV/AIDS (ZAPHA+) children’s club, Ms Msham Mwarimwana was given information and advice on how to live positively with HIV. She started HIV treatment and has stuck to the regime since, despite a lack of adequate nutrition, which she says makes adherence difficult.

After she finished secondary school she began volunteering for ZAPHA+. She facilitates clubs for children and adolescents. “We exchange ideas, share our challenges and advise one another,” she says. Her only wish is that the club had more space and was able to provide refreshments, particularly for the younger children. “We stay there and talk for a long time!” she says.

She is also a member of the Young Reporter Network, a national consortium of community-based children’s radio projects that reaches millions of listeners. She and other young reporters produce a 30-minute programme each fortnight, using audio diaries, commentaries and interviews to share their stories.

Ms Msham Mwarimwana has big dreams and plans to study journalism. She is proud of her contribution to the AIDS response in her country. “My role towards getting to zero—zero new HIV infections, zero discrimination and zero AIDS-related deaths—is to get my story heard to confront stigma and discrimination and draw attention to community issues that affect children and youth,” she says.

Looking back, Ms Msham Mwarimwana says she would have liked her parents to tell her she was HIV-positive. She says it is very important for children to know their HIV status. “I could have started my treatment even earlier,” she says. “Parents of HIV-positive children need to educate society that HIV can affect anyone and there is no shame.”

She believes that AIDS-related illnesses are a leading cause of death among adolescents in eastern and southern Africa because many adolescents are unaware of their HIV status and do not know that there are life-saving treatment and support structures available to them. “ZAPHA+ is my second home,” she says. “I am so thankful for the support I have received there.”

She has a simple message for her peers. “Accept and be open about your HIV status, be confident and believe in yourself.” 

UNAIDS has been supporting ZAPHA+ since its establishment through financial and technical support. UNAIDS supports the ZAPHA+ Secretariat to coordinate its activities in the 10 district clusters to ensure meaningful participation of ZAPHA+ in the development, implementation and review of the United Nations Joint HIV Plan in Zanzibar. UNAIDS also supports its resource mobilization efforts. Other United Nations agencies are closely engaged, in particular the United Nations Children’s Fund.

Just days after World AIDS Day, the 19th International Conference on AIDS and STIs in Africa (ICASA) has opened in Abidjan, Côte d’Ivoire.

At the opening ceremony, UNAIDS Executive Director Michel Sidibé implored the audience not to let ongoing political and social troubles threaten the many achievements made in the AIDS response. In his speech, he laid out key priorities, including ensuring that women and adolescents be better protected from HIV, and demanded more space for civil society, crediting civil society’s huge impact in the AIDS response.

ICASA, a biennial gathering that this year will be held from 4 to 9 December, brings together people working in the field of HIV, as well as leaders, people living with HIV, activists and representatives of civil society. In addition, researchers from around the world will share the latest scientific advances to develop strategies to further HIV prevention and treatment options. More than 4000 delegates from more than 125 countries have gathered for the event. 

UNAIDS is hosting several sessions during the conference to discuss the western and central Africa HIV catch-up plan. Other events organized by UNAIDS at ICASA include sessions on reinvigorating HIV prevention following the Prevention Coalition initiative, innovative partnerships to drive male engagement, ending the AIDS epidemic among children and young women under the Start Free, Stay Free, AIDS Free framework and achieving the Fast-Track Targets in cities.

Abidjan is playing host to ICASA for the second time. In the ICASA held in 1997, the then French President, Jacques Chirac, denounced the injustices experienced by people living with HIV in Africa. 

During a visit to Canada, on 28 November UNAIDS Executive Director Michel Sidibé met with members of the Government of Quebec, members of parliament and civil society at the National Assembly of Quebec.

In meetings with the Quebec Minister of Health, Gaétan Barrette, and the Deputy Minister for International Relations and the Francophonie, Jean-Stéphane Bernard, Mr Sidibé underlined that it is important that UNAIDS’ work be aligned with that of the Quebec Government and stressed the need to tailor the response to HIV in accordance with the needs of the country or region. He also spoke about the urgent need to make HIV prevention more effective and the importance of investing in HIV prevention and reducing the number of new HIV infections.

Mr Sidibé also discussed Quebec’s AIDS response and visited Point de Repères, a community-based organization that advocates for harm reduction. He met with leaders from MIELS-Québec, a community-based organization working for more than 30 years with people living with HIV, and Ruban en Route, a not-for-profit organization providing prevention education programmes designed to reduce sexual risk behaviours.

During meetings with members of Quebec’s Parliament, including with Jacques Chagnon, President of the National Assembly and President of the Parliamentary Assembly of La Francophonie, Mr Sidibé emphasized the important role that parliamentarians play in the global response to HIV. He also stressed that parliamentarians are critical to advancing the vision of ending AIDS by 2030 through their leadership, advocacy role and ability to authorize and oversee spending on AIDS.