Meet the Changemakers who are working to improve the everyday lives of people with HIV in Kazakhstan, Russia and Romania
Wednesday 1st December marked the 33rd global World AIDS Day, a time to remember those who have died from AIDS-related illnesses and to continue to campaign for equality of access to services regardless of someone’s background or where they live.
In 2020, there were an estimated 37.7 million people living with HIV globally, of which 27.5 million were in treatment – illustrating just how far we have come since the 1980s, when an HIV diagnosis was seen as a death sentence.
But there’s still a long way to go. While many countries, including the UK, have seen numbers fall, AIDS-related deaths and HIV infections have risen elsewhere, with Eastern Europe and Central Asia (EECA) witnessing “the fastest growing HIV epidemic in the world”, according to UNAIDS, which advocates for global action on HIV.
Deaths from AIDS-related illnesses in EECA have risen by 32% in the past 10 years and now account for approximately 100 deaths a day. More than 380 people are diagnosed with HIV every day in the region, adding to the 1.6 million living there with the virus.
Radian – a groundbreaking partnership between the Elton John AIDS Foundation and the pharmaceutical company Gilead Sciences – is taking steps to help reduce new HIV infections and to end AIDS as a public health threat by 2030 in EECA.
HIV was such a tipping point in my life that it made me devote my life to its prevention
The Radian partnership, through its Unmet Need fund, is financing grassroots organisations in EECA that are supporting key populations who are most at risk of HIV. At the same time, Radian’s Model Cities programme is also providing funding to improve access to comprehensive lifesaving HIV services in key EECA cities and regions with the aim of reducing new HIV infections and AIDS-related deaths at scale.
Radian hopes its Changemakers campaign will also make a difference by highlighting the work of a diverse group of community leaders, many of whom are living with HIV, by sharing their personal stories. The campaign aims to help raise awareness of the HIV epidemic that is growing in their part of the world and the stigma still associated with HIV.
Elena, a former drug user, was told by doctors that she had only three years to live when she was diagnosed with HIV 25 years ago. “It seemed like my whole life had stopped,” she says.
We need more financial support, political will, good HIV centres and more doctors
Elena completed a drug rehabilitation programme, sought care and treatment for her HIV and realised that her positive diagnosis was not the death sentence predicted. Supported by her husband, she decided to help others living with HIV, and reduce the spread of HIV and the stigma associated with it in Almaty, Kazakhstan, where she lives. “HIV was such a tipping point in my life that it made me devote my life to the prevention and treatment of HIV and drug use.”
Today, her organisation supports people in Almaty living with HIV and helps them register for, and access, health services. But the organisation is much more than a signposting service.
The organisation runs peer support groups for people living with HIV, offers legal advice sessions to help them defend their rights, and organises psychological counselling sessions alongside social activities such as dance classes. It also provides temporary accommodation for up to six months. “We try to provide people with all types of services,” Elena says.
Support from Radian has been pivotal in helping the organisation access ongoing and reliable financial support from the government and create new partnerships with other organisations across the city.
Radian backing has also been key in establishing a closer working relationship with the local AIDS centre. The support has also enabled the organisation to expand its mobile HIV testing service and,
going beyond HIV-related issues, it offers access to general healthcare services for vulnerable people. “Today, we can provide all the necessary range of services, taking into account all the real needs of a person,” Elena says.
So what’s been her biggest reward over the years? “The success stories,” she says. “When you see that your work is not in vain, it’s cooler than a salary. When you see destinies change for the better – that’s the reward.”
Alexey is from Chelyabinsk, Russia. Over the past decade, the revalence of HIV in the region has fallen compared with other parts of Russia – a testament to the success of the work of his organisation and others involved in HIV support.
But despite improvements, people are continuing to die. “Why does this still happen when there is modern treatment?’ he says. “HIV ceased to be a death sentence a long time ago.”
Alexey set up an organisation to reduce the spread of HIV among people in the prison system and people who use drugs to help people find a way back into society after release from prison. “People can often struggle to recover their lives after the stress of being in a correctional institution,” says Alexey. “Our task is to help people first to take care of their health regardless of the disease, whether it’s HIV, hepatitis, tuberculosis. Our goal is for as many people as possible to start treatment and to continue treatment when they are on the outside.”
The organisation promotes HIV awareness to vulnerable groups, explaining the risks of transmission and how a simple test can confirm whether somebody is positive. There is also an open invitation to visit the organisation’s offices to make use of other services including legal advice, and psychological and social support.
I dream that we’ll live in a world with no discrimination towards people living with HIV
The organisation also conducts community outreach across the region, and established free on-the-spot HIV testing and counselling centres attached to hospital casualty departments and accident rooms three years ago. “[It] may not be full-scale, but people can take a HIV test round the clock, anonymously, free of charge, and quickly,” Alexey says.
As Alexey reflects on his achievements in the past decade, what are his hopes for the future? “I have a dream that we will live in a world where – it could be in 10 or 15 years – there will be no discrimination towards people living with HIV.”
Alina has been supporting people living with HIV in Romania for 17 years. Many of those who came to her in the early days are still in touch with her community organisation and are thriving. Some have even become real friends.
But Alina says that while some people are starting to be more optimistic about their HIV diagnosis, others still need time to understand what it means for them. “For a newly diagnosed person, it’s very difficult because they’re thinking: ‘I will die very soon.’”
Over nearly two decades, Alina’s grassroots organisation, which has received funding through Radian, has been instrumental in helping to transform the lives of people living with HIV.
The organisation uses social media to get across health promotion messages – including the importance of HIV testing – to vulnerable groups. It offers counselling to people living with HIV and information about their individual treatment, possible side effects and the importance of adherence. “Doctors don’t have the time to tell them things like: ‘You know you have to take it [the pills] with this … with food or without food’,” Alina says. “I’m working on all aspects of life with HIV. I’m there for them to talk to.”
Her proudest achievement to date has been the introduction of an ambulant pharmacy service, which was established 11 years ago and allows her to supply free HIV treatment to people in need. “That’s
the main thing I’m happiest about,” she says. “One standout moment was being able to help a young pregnant woman who had been out of treatment. But because she received access to HIV treatment during her last trimester, she gave birth to a child who didn’t have HIV.”
In the past 10 years, the number of people in Romania living with HIV has increased from 15,000 in 2010 to 19,000 in 2020, according to UNAIDS.
So what does Alina think is pivotal in the next 10 years to help EECA – including her own country – meet the UNAIDS goal to end HIV as a public health threat by 2030, as well as meeting her own hopes
and those of other changemakers to rid the world of the discrimination and stigma associated with the virus?
“More financial support and political will. As well as good HIV test centres, more doctors and new treatments. That’s what I want.”
This article was originally published on theguardian.com as part of the RADIAN and Guardian Labs Changemakers campaign
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