When Anna Aryabinska fled from Kyiv in March 2022 along with her ex-partner’s youngsters, she had little concept that she would find yourself supporting not solely his household, however many HIV-positive Ukrainians in Poland. Till Russia’s full-scale invasion, Aryabinska had been an activist for the Ukrainian organisation Optimistic Ladies, supporting girls with HIV. Now she is one in all a gaggle of volunteers helping fellow Ukrainian refugees to maintain taking treatment for HIV, in addition to combine into healthcare techniques in European international locations which have very completely different epidemic profiles and requirements of remedy.
Ukraine has the second-largest HIV epidemic in Europe after Russia, with an estimated 260,000 individuals dwelling with the illness. Over six million Ukrainians are actually refugees from Russia’s full-scale invasion, in keeping with the UNHCR. In Poland, the highest vacation spot, 1.6 million Ukrainians have utilized for short-term safety schemes (the overwhelming majority are girls and youngsters as martial regulation bans most males aged 18 to 60 – like Aryabinska’s ex-partner – from leaving Ukraine). On prime of points round housing, work and education, individuals with HIV face an extra, pressing issue: find out how to entry the antiretroviral (ARV) medicines they should take daily to suppress the virus.
Quite a lot of antiretroviral medication used to deal with HIV an infection. Credit score: NIAID Supply: Wikimedia Commons
Tough adjustment
Anna Aryabinska left Kyiv in March 2022, when Russian forces had been just some kilometres from town. Higher ready than many, she took a three-month provide of ARVs and a medical word from Kyiv docs along with her. When she reached Poland she registered immediately on the native AIDS centre. Since then, she has been guiding others by means of an analogous course of as a part of an internet service, HelpNow, supported by the Ukrainian NGO Alliance for Public Well being.
‘People are in such a panic,’ she says. ‘And they have no one else to ask.’ HelpNow has arrange hubs in Poland, Germany and the Baltic states, and has helped Ukrainian refugees in 47 international locations with on-line help, in addition to in-person help in main refugee hubs like Warsaw. HelpNow volunteers teamed up with native NGOs to assist refugees baffled by sensible points like discovering translators for medical information or physician’s appointments, receiving obligatory documentation, or just reaching the closest AIDS clinic – there are solely 16 in Poland, in comparison with 300 in Ukraine.
HIV is little talked about in Poland, a conservative nation that rejects intercourse training and LGBT rights. There are not any prevention programmes for populations at extra threat of an infection, like drug customers or homosexual males, and the illness is extremely stigmatised. Solely 4 individuals in Poland have ever come out publicly within the media as dwelling with HIV.
This was a shock for Ukrainian activists like Aryabinska, who’ve been campaigning for HIV consciousness and tolerance for many years. ‘I have a feeling I’m again within the Nineteen Nineties, in comparison with Ukraine,’ Aryabinska stated. ‘There are some organisations that work here, but the general population knows nothing.’
There have been about 29,000 registered circumstances of HIV in Poland because the epidemic started within the Eighties. New recorded circumstances of HIV have been going up since earlier than the COVID-19 pandemic hit in 2020, though as a result of disruption brought on by the pandemic they are solely now exhibiting up in nationwide statistics. However as a result of nobody talks about it brazenly, few are conscious that HIV circumstances exist, in keeping with NGOs like Fundacja Edukacji Społecznej (Basis for Social Training), which has been working for 20 years within the sphere of HIV remedy in Warsaw.
Medical help with HIV in Poland is free and universally out there, and Ukrainians who’ve began remedy in Poland say the medical workers usually have a greater angle in direction of them than their Ukrainian counterparts. Testing, nevertheless, is proscribed to twenty-eight centres for voluntary counselling and testing, and prevention is much more restricted. Solely 5 per cent of the general nationwide funds for HIV is for prevention providers, and the overwhelming majority of that 5 per cent goes to testing.
At first of the full-scale invasion, Fundacja Edukacji Społecznej acquired requests for assist from Ukrainian migrants already in Poland who might not get new shares of ARVs, which they had been used to accumulating from Ukraine each three months. The NGO helped to get these individuals onto remedy programmes in Poland and teamed up with HelpNow volunteers to help the flood of latest refugees, usually assembly them straight off the trains coming from cities beneath siege.
‘People have only one bag, they have nothing, they don’t know what to do and naturally firstly they attempt to discover a protected area, and afterwards they ask about remedy,’ Magdalena Ankiersztejn-Bartczak, director of Fundacja Edukacji Społecznej, tells me. Initially Polish medical workers typically wanted help too, to take care of a brand new contingent of sufferers. Ukraine, for instance, has many ladies with HIV, whereas feminine and little one sufferers are virtually unknown in Poland.
‘We are a new experience for doctors here as well. Now Polish doctors are ringing me to ask how to talk to these patients; for example, what to say to persuade them to keep coming [for treatment],’ Aryabinska says.
Trauma and worry of stigmatization
The HIV remedy routine utilized in EU international locations additionally differs from that in Ukraine. Poland has handed laws to make sure that Ukrainian refugee sufferers can proceed to make use of the ARV drugs they’re used to with out interruption, and made different diversifications equivalent to permitting longer take-home shares of medicines and exchanging affected person info with Ukrainian well being services. Poland now supplies ARV remedy for over 3,000 Ukrainians, in keeping with the nationwide AIDS centre.
However the sufferers’ psychological obstacles to remedy will be more durable to beat. Many refugees don’t need to disclose their well being standing, for worry of stigma, but additionally from a hope or notion that their scenario is short-term and that they are going to quickly return residence. Battling melancholy and the lack of social buildings like household and work, they’ll turn into overwhelmed or detached to their well being, and lapse simply from adherence to each day remedy.
In accordance with Ankiersztejn-Bartczak, lots of the Ukrainians beginning remedy now in Poland are late presenters, turning to docs when the HIV an infection is already at a sophisticated stage and inflicting many well being issues. Some might have been unaware of their standing, however HelpNow volunteers say they’re approached by refugees who admit they haven’t taken any remedy for months due to the disruption of their lives, or the worry that if their standing is disclosed, they may for instance be evicted from rented properties.
As somebody who has lived brazenly with HIV for a few years and labored on a disaster hotline in Ukraine, Aryabinska is nicely positioned to supply help. It’s an exhausting, 24-hour process, however it additionally helps her to take care of her personal trauma linked to leaving her residence.
‘This work kept me sane as well, when I knew that people were in such trouble and pain, but I was able to help them,’ she says.
There’s a widespread social stigma towards HIV in Ukraine too. However there’s additionally an intensive system of prevention, analysis and remedy, led by NGOs in partnership with state well being providers and designed to succeed in and help weak teams. One other distinction between Ukraine and Poland is Ukraine’s case administration strategy to HIV and different socially harmful ailments. Social employees help shoppers not solely to start out and cling to remedy for HIV, TB or hepatitis, however to resolve a variety of associated medical and psycho-social points. Regardless of the Russian bombing and looting of healthcare services and infrastructure in Ukraine, well being and social employees nonetheless within the nation have continued to help their shoppers who’ve left, sending them drugs and monitoring their well being from a distance.
Difficult transition
In addition to visiting his shoppers nonetheless within the japanese Ukrainian metropolis of Kryvyi Rih, social employee Serhiy Pidvalyuk from the NGO Kryvyi Rih Public Well being Basis is now used to parcelling up six-month provides of ARVs and dispatching them, with an accompanying letter from the healthcare facility, to his shoppers in Poland, Germany and Turkey. ‘They are scared to reveal their status, so it’s simpler this manner,’ he says.
The sufferers use non-public clinics overseas to measure their well being and illness indicators, like CD4 and viral load, and ship the outcomes again to docs in Ukraine by way of on-line messengers. After six months, Pidvalyuk encourages his shoppers who’re nonetheless overseas to register with healthcare techniques of their new place. ‘We have no right to force them to do so,’ he provides, ‘but we cannot support them forever.’
Although the Ukrainian case administration system has been invaluable in supporting sufferers by means of a tough transition, it has a draw back. Volunteers, Ukrainian social employees and medics all say that Ukrainian refugees will be very passive relating to resolving points overseas as a result of they’re used to counting on their case managers.
‘Case management is a process of leading people by the hand. In some ways it is wonderful, but in other ways it’s an issue,’ says Mariia Ralko, a volunteer with HelpNow in Poland. ‘Now when clients go abroad, they just sit and wait for someone to help them.’
However, different European international locations might be taught one thing from Ukraine’s strategy to HIV. ‘Maybe Ukrainians will change the medical systems in Europe,’ Aryabinska says. ‘In Poland there’s no medical-social help, and other people don’t perceive what we do. However now they’ve began to ask us for experience, and examine the techniques of service provision.’
In the meantime, Aryabinska has used her Ukraine expertise to arrange the primary self-help group for HIV-positive individuals and members of weak teams in Poland. ‘I really missed live meetings and the sense of community,’ she provides. ‘And people come from all over Poland, at their own expense, so I see it’s not simply me who wants it.
Reporting for this piece came about throughout an project for the Alliance for Public Well being, documenting the organisation’s programmes in response to the battle in Ukraine.
