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Addressing HIV stigma in healthcare, community, and legislative settings in Central and Eastern Europe

AIDS Research and Therapy volume 20, Article number: 87 (2023) Cite this article

Abstract

Introduction

Surging HIV prevalence across countries of Central and Eastern Europe (CEE) is largely a result of poor HIV care engagement and a lack of comprehensive support for key populations. This is fostered by widespread stigma across healthcare, community, and legislative settings.

Discussion

Throughout CEE, HIV stigma and intersectional stigma are serious obstacles to providing adequate medical care to people living with HIV. Anticipated and enacted (experienced) stigma from healthcare professionals, and fears of breaches in confidentiality, deter individuals from having an HIV test and engaging in HIV care. Furthermore, negative connotations surrounding HIV infection can lead to discrimination from family, friends, colleagues, and the public, leading to internalized stigma and depression. Key populations that have higher HIV prevalence, such as men who have sex with men, people who inject drugs, transgender individuals, and sex workers, experience additional stigma and discrimination based on their behaviour and identities. This contributes to the concentrated HIV epidemics seen in these populations in many CEE countries. The stigma is exacerbated by punitive legislation that criminalizes HIV transmission and penalizes sexual orientation, drug use, gender identities, and sex work. Despite high levels of HIV stigma and intersectional stigma, there are many evidence-based interventions that have reduced stigma in other parts of the world. Here, we discuss the interventions that are currently being enacted in various countries of CEE, and we suggest additional effective, evidence-based interventions that will tackle stigma and lead to increased HIV care engagement and higher rates of viral suppression. We cover the promotion of the undetectable = untransmittable (U = U) message, stigma-reduction education and training for healthcare professionals, patient-centric approaches for testing and treatment, and advocacy for non-discriminatory legislation, policies, and practices. We also consider targeted stigma-reduction interventions that acknowledge the wider challenges faced by marginalized populations.

Conclusions

HIV stigma and intersectional stigma in CEE drive poor engagement with HIV testing services and care. Widespread adoption of evidence-based interventions to tackle stigma highlighted in this review will improve the quality of life of people living with HIV, improve HIV care engagement, and ultimately slow the surging HIV prevalence and concentrated epidemics occurring throughout CEE.

Introduction

Surging HIV prevalence in Central and Eastern Europe (CEE) contrasts sharply with the slowing of HIV epidemics in other regions of the world [1,2,3]. Across CEE, concentrated HIV epidemics are occurring among marginalized populations [4,5,6].

The original 90-90-90 targets of the Joint United Nations Programme on HIV/AIDS (UNAIDS) were not reached in CEE and progress to meet the updated 95-95-95 targets has been further derailed by the COVID-19 pandemic [1]. HIV stigma is commonplace within healthcare, community, and legislative settings, and is partly responsible for the missed targets [1, 3, 7,8,9,10].

Stigma presents as anticipated, enacted (experienced), and/or internalized [11]. This stigma affects engagement at every stage of the HIV care pathway, driving the high level of HIV late presenters in CEE [7] and undermining the effectiveness of HIV programmes [1]. In addition, pervasive discrimination arises from the widespread stigma and is detrimental to the physical and mental health of people living with HIV (PLWH). Further complicating the issue, intersectional stigma affects key populations of PLWH who, in addition to facing HIV stigma, also endure cultural rejection on the basis of sexual orientation, drug use, gender identities, and sex work [9].

Here, we discuss the HIV stigma and intersectional stigma experienced by PLWH in healthcare, community, and legislative settings across CEE, and the evidence-based interventions that can be used to tackle stigma and improve HIV care engagement.

Discussion

HIV stigma in Central and Eastern Europe

HIV stigma is problematic for HIV care engagement worldwide but, in our experience, it is particularly prevalent in CEE. Stigma can hinder HIV healthcare professionals (HCPs) from providing quality care, prevent family and friends from supporting PLWH, and stop legislators from adequately protecting human rights.

HIV stigma in healthcare settings

When accessing healthcare, the stigma that is anticipated and experienced by PLWH is associated with increased internalized stigma [12], reduced trust in HCPs, and poor HIV care engagement [10, 13, 14].

Case reports highlight the discrimination PLWH face in CEE in the healthcare setting; for example, a patient living with HIV in Serbia stated “the worst stigma we face is from healthcare workers” [6]. PLWH in CEE are sometimes refused routine treatment at medical centres and dentists and, in some instances, endure long waiting times in isolation rooms that are subsequently disinfected. The action of refusing to treat a patient can be made on the basis that the centre or HCPs are ill-equipped to treat PLWH.

Anticipated HIV stigma from HCPs deters people from using HIV testing services and results in late presentation [10, 15]. A meta-analysis involving 10 studies from low- and middle-income countries found that individuals with high levels of perceived HIV stigma were more than twice as likely to present late for HIV care than those who perceived low stigma [16]. There is evidence of HCPs in many countries disclosing people’s HIV status without consent [5]. Consequently, fears of breaches in confidentiality lead to PLWH not disclosing their HIV status to their primary care providers [17, 18]. A study that involved interviewing 79 PLWH in Albania found that 97.4% reported fear of disclosure of their HIV status as a barrier to accessing HIV care [19].

Stigma can also arise in healthcare settings during transitional periods, such as when mothers access parent-to-child HIV transmission services [20] or when adolescent PLWH progress into adulthood [21]. Since the start of the COVID-19 pandemic, some PLWH have reported increased internalized stigma and anticipated aggravated stigma from having both HIV and testing positive for COVID-19 [22]. In some CEE countries, the pandemic has led to shortages of certain antiretroviral medications and a reduction in HIV testing [1, 23].

HIV stigma in community settings

Discriminatory attitudes towards PLWH are widespread among the public in CEE. More than half of 15–49 year olds in Albania self-reported discriminatory attitudes towards PLWH [1], which is likely representative of attitudes in neighbouring countries. HIV stigma in the community remains a barrier to HIV care engagement, particularly for women [14, 24, 25]. Stigma also deters PLWH from disclosing their HIV status [26], which can have implications for onward transmission of HIV, treatment adherence, and an increased sense of isolation.

Anticipated and enacted HIV stigma from friends, family, and the community can lead to internalized stigma, which contributes to poor psychological health [12, 27, 28] and poor HIV care engagement. In a Ukrainian study of 204 PLWH aged 13–25 years, HIV stigma and non-disclosure of HIV status at home were associated with moderate/severe anxiety symptoms [29]. Many PLWH do not disclose their HIV status to their friends and family in anticipation of stigma, leaving them fearful of being observed taking pills and without a support system [20].

HIV stigma in legislative settings

Punitive laws in CEE regarding HIV are driven by stigma and these laws can reduce HIV care engagement [1, 7]. Nearly all CEE countries criminalize HIV transmission or can prosecute individuals who transmit HIV using other established laws [7, 30,31,32,33,34,35]; in some countries, this extends to HIV exposure without transmission [30,31,32, 35]. In addition, young people’s ability to access HIV services is limited by parental consent laws in many CEE countries [36].

Laws preventing the travel of migrants with HIV can increase HIV burden and risk among migrants and within the region in which they travel [37]. Despite this, Ukrainian refugees have been granted free access to healthcare, including antiretroviral therapy, in many CEE countries [38].

Intersectional stigma in Central and Eastern Europe

The increasing prevalence of HIV in CEE is driven by concentrated epidemics in marginalized populations, such as men who have sex with men (MSM), people who inject drugs (PWID), transgender individuals, and sex workers [4,5,6]. PLWH from these populations not only encounter stigma based on their HIV status but also around their identities and behaviours [4, 6, 10]. This stigma can deter many PLWHs from accessing HIV care, adopting a social support network, and maintaining a positive self-image [7, 8, 10]. Furthermore, an accurate overview of HIV in marginalized populations in CEE is challenging because of missing national data, likely a result of institutionalized discrimination and an unfavourable legal environment [8, 39,40,41].

Marginalized populations often report hostile or judgemental attitudes when attempting to access healthcare services [8, 10]. A study in Hungary identified the complete lack of public health programmes targeting MSM as a barrier to MSM accessing HIV services [42]. In Russia, interviews with HIV-positive PWID revealed anticipated and enacted stigma as strong deterrents to engaging with HIV services [43], and the situation is similar in CEE.

Public and political support for the improvement of HIV services for marginalized populations are limited by stigma and religious rejection of LGBTQ + identities, drug use, and sex work [1]. In addition, internalized stigma regarding homosexual sex can increase HIV-risk behaviours among MSM [44, 45]. Often forgotten, elderly PLWH also face age-related stigma that can contribute to a lack of support from family and friends [46].

Intersectional stigma is exacerbated by punitive legal environments [9]. After sub-Saharan Africa, Eastern Europe has the highest HIV prevalence (10.9%) among female sex workers globally [39]. Despite this, sex work is criminalized or subject to punitive regulation in many CEE countries [5, 47]. Reduced engagement in HIV care has been associated with legislation negatively targeting MSM [48], PWID [49], and sex workers [50].

Interventions and initiatives tackling HIV stigma

New UNAIDS targets aim for fewer than 10% of PLWH to experience stigma and discrimination by 2025 [7]. This can only be achieved by the proactive use of stigma-reducing interventions.

Despite a lack of published studies in CEE that assess stigma-reducing interventions [51], there are examples worldwide of people-centred approaches that tackle HIV stigma leading to increased HIV care engagement [1]. Many of these approaches (Table 1) can be applied within the healthcare, community, and legislative settings of CEE. Some effective stigma-reducing interventions are already being applied within CEE, but to ensure their widespread implementation, additional resources and funding will be required. Interventions should be far-reaching and should include hospitals, doctors’ surgeries, dentists, nursing homes, needle exchange programmes, workplaces, schools, universities, religious groups, youth centres, local councils, and the family home.

Table 1 Examples of interventions to tackle HIV stigma in healthcare, community, and legislative settings
Full size table

The promotion of the undetectable = untransmittable (U = U) message is key to tackling HIV stigma in local communities in CEE, and it needs to be disseminated through multiple modalities. Stigma has been impeding the communication of the U = U message from HCPs to patients and its acceptance by the public [52, 53], but an evidence-based U = U message can lower stigmatized attitudes [54]. U = U awareness will also likely reduce anticipated HIV stigma relating to dating and sex [55], improving the quality of life (QoL) of PLWH. For example, among patients enrolled in long-term multidisciplinary services at the Baylor Black Sea Foundation in Romania, > 70% of PLWH were aware of U = U and > 70% reported a good QoL [56]. U = U messaging should be promoted in all HIV care guidelines within CEE. In addition, training on patient–provider communication of U = U and the evidence supporting U = U should form part of the education of all HIV care providers.

Monitoring the effectiveness of HIV stigma-reducing interventions using validated measures can support local programmes advocating for additional resources and enable the identification and sharing of best practice. The HIV Stigma Scale is a reliable and validated measure of HIV-related stigma [57], which could be adapted for use in CEE in the same way that it has been in Turkey [58, 59], Ukraine [29], and Japan [60]. An adapted HIV Stigma Scale to monitor stigma related to pre-exposure prophylaxis use has also been developed [61]. In healthcare settings, the Health Care Provider HIV/AIDS Stigma Scale can be used to prioritize training needs, draft interventions, and assist HCPs with self-assessing their stereotyping, prejudiced beliefs, and discriminatory behaviours [62]. Periodic assessments of stigma levels experienced by patients can be used to develop strategic quality improvement objectives.

Interventions and initiatives in healthcare and settings

Highly effective stigma-reducing interventions can be implemented across CEE to address stigma in healthcare and community settings. Best-practice sharing and soft-skills training can reduce enacted stigma from HCPs. In particular, interventions focused on training popular opinion leaders among HCPs have been effective in reducing HIV stigma and discrimination [63].

It is essential that HCPs have an accurate understanding of HIV transmission and prevention. The Bulgarian Scientific Society of Infectious Diseases organizes training for HCPs on these topics with the aim of reducing associated stigma towards patients. Likewise, the Croatian Association for HIV and Viral Hepatitis reduces HIV stigma among HCPs via organized training on the needs of PLWH and the challenges and legal issues they face. HCPs are also encouraged to become involved with their initiatives and campaigns. Simple educational materials can also be used to empower patients. For example, a local-language leaflet distributed to PLWH in Slovenia included advice on their legal rights regarding personal information protection, privacy, and treatment, and also provided instructions on how to report HIV stigma and/or discrimination [64].

Patient-centric healthcare approaches, such as telehealth and self-testing at home, which have been used to reduce the risk of COVID-19 transmission and promote privacy, can be utilized for HIV care. These approaches will likely reduce avoidance of HIV services because of anticipated HIV stigma in healthcare settings [65].

Fostering relationships between organizations running anti-stigma initiatives and the media can lead to campaigns that disseminate anti-stigma messages to a wide audience. These campaigns can address the HIV stigma ingrained in communities, which largely originates from media coverage of HIV in the 1980s. Media campaigns can involve celebrities/influencers and utilize social media, television, and newspapers. The average person in CEE spends over 3.5 h daily watching television [66], and 68–82% of people in CEE have smartphones [67]. For young PLWH, apps can provide a safe virtual space to engage with other PLWH, helping to reduce internalized stigma [68]. Young PLWH using a community-based app in the USA were able to open up about intense internalized stigma, such as bathing in bleach to ‘feel more clean’ and like they ‘don’t have HIV’ [68].

In the workplace, HIV stigma-reduction education and training for employers can be used to reduce stigma that is anticipated and experienced by PLWH when seeking or maintaining employment [69].

Interventions and initiatives in legislative settings

To tackle punitive laws that entrench discrimination, interventions need to reduce stigma among legislators and stimulate public support. Punitive legislation needs to be adapted so that it empowers PLWH to defend their human rights, health, and safety. Advocation for legislation and policy change is most effective with the involvement of patients who can share real-life stories.

Change can be advocated for through the media and by working with governments and non-government organizations (NGOs). Examples include the formation of national coalitions against HIV criminalization, the promotion of legal aid for PLWH, and the monitoring of human rights violations. NGOs in Slovenia successfully advocated for penalties for dentists who discriminate against their patients with HIV. In Romania, the Baylor Black Sea Foundation, alongside social workers and lawyers, empowers PLWH to use and advocate for their legal rights [64].

Interventions and initiatives tackling intersectional stigma

There is an urgent need for more effective intersectional stigma interventions in CEE. In healthcare and community settings, interventions to tackle intersectional stigma must address the wider challenges faced by marginalized populations. HCPs who offer unbiased care to PLWH from marginalized communities will build strong relationships with their patients, which can improve HIV care engagement.

Examples of interventions that address intersectional stigma in the healthcare setting include stigma-reduction and soft-skills training and unbiased U = U message communication training. In addition, enacted intersectional stigma can be challenged in the healthcare setting by repercussions for staff who display stigma-related discrimination towards patients.

Targeted interventions can be effective in healthcare and community settings. For instance, Teenergizer, a youth organization supporting teenagers with HIV across Eastern Europe, helps young people to navigate life with HIV and to deal with the associated stigma and discrimination [4]. In Russia, a community-based, adapted form of acceptance and commitment therapy aims to tackle internalized stigma experienced by HIV-positive PWID by providing a space outside formal healthcare settings [70]. This approach could also be used in CEE.

NGOs that work with marginalized communities should include anti-stigma and psychological support as part of their services. For instance, CheckPoint, an NGO operating in Bulgaria that works with MSM, offers psychosocial support alongside traditional HIV testing services and treatment. The interdisciplinary cooperation of specialized NGOs, HCPs, and charities, through interventions like field visits, community testing, education, and conferences, can be highly effective in combating stigma and discrimination. Additionally, the inclusion of marginalized communities in the development and execution of stigma-reducing interventions can improve their overall effectiveness [1].

To tackle intersectional stigma among the public, marketing campaigns, including television and community-based apps, can be used to promote acceptance and to advocate for changes in punitive legislation affecting marginalized communities. Modelling predicts that 33–46% of new HIV infections among sex workers and clients over a decade could be prevented by decriminalizing sex work [71].

Interventions tackling intersectional stigma can be monitored by using validated measures with expanded scopes, such as the People Living with HIV Stigma Index 2.0 [72, 73] and the Experiences of Sex Work Stigma scale [74]. These tools may help to identify successful stigma-reducing interventions that are already improving the lives of PLWH from marginalized communities, so that best practice can be shared across CEE.

Conclusions

HIV stigma in CEE drives poor engagement with HIV care and contributes to inconsistent antiretroviral therapy adherence, which ultimately results in low viral suppression and poor health outcomes for PLWH. Marginalized populations in CEE – such as MSM, PWID, transgender individuals, and sex workers – have a higher HIV burden but poorer access to HIV care because of intersectional stigma. Evidence-based interventions are being used to tackle HIV stigma and intersectional stigma. Further widespread adoption of these interventions will improve the QoL of PLWH, improve HIV care engagement, and ultimately slow the increasing HIV prevalence and concentrated epidemics occurring throughout CEE. Future anti-stigma interventions need to be well designed, with detailed descriptions of their content to allow for replication and critical evaluation [75].

Data Availability

Not applicable.

Abbreviations

AIDS:

acquired immunodeficiency syndrome

CEE:

Central and Eastern Europe

COVID-19:

coronavirus disease 2019

HCP:

healthcare professional

HIV:

human immunodeficiency virus

LGBTQ+:

lesbian, gay, bisexual, transgender, queer, plus

MSM:

men who have sex with men

NGO:

non-government organization

PLWH:

people living with HIV

PWID:

people who inject drugs

QoL:

quality of life

UNAIDS:

the Joint United Nations Programme on HIV/AIDS

U = U:

undetectable = untransmittable

References

  1. UNAIDS. Prevailing against pandemics by putting people at the centre – World AIDS Day report. 2020. https://www.unaids.org/en/resources/documents/2020/prevailing-against-pandemics. Accessed 1 Jun 2022.

  2. Gökengin D, Oprea C, Uysal S, Begovac J. The growing HIV epidemic in Central Europe: a neglected issue? J Virus Erad. 2016;2(3):156–61.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Gökengin D, Oprea C, Begovac J, Horban A, Zeka AN, Sedlacek D, et al. HIV care in Central and Eastern Europe: how close are we to the target? Int J Infect Dis. 2018;70:121–30.

    Article  PubMed  Google Scholar 

  4. Cousins S. Fighting the HIV epidemic in eastern Europe and central Asia. Lancet Child Adolesc Health. 2019;3(8):522–3.

    Article  Google Scholar 

  5. UNAIDS. Miles to go: the response to HIV in Eastern Europe and Central Asia. 2018. https://www.unaids.org/sites/default/files/media_asset/miles-to-go_eastern-europe-and-central-asia_en.pdf. Accessed 2 Jun 2022.

  6. Cousins S. HIV in Serbia: stigma and a stagnant HIV response. Lancet HIV. 2018;5(7):e343–4.

    Article  PubMed  Google Scholar 

  7. UNAIDS. Towards 10-10-10 in eastern Europe and central Asia. 2021. https://www.unaids.org/en/resources/presscentre/featurestories/2021/march/20210315_10-10-10-eastern-europe-central-asia. Accessed 2 Jun 2022.

  8. UNAIDS. 90-90-90: An ambitious treatment target to help end the AIDS epidemic. 2014. https://www.unaids.org/sites/default/files/media_asset/90-90-90_en.pdf. Accessed 26 May 2022.

  9. UNAIDS. On the fast-track to end AIDS by 2030: focus on location and population. 2015. https://www.unaids.org/en/resources/documents/2015/FocusLocationPopulation. Accessed 28 May 2022.

  10. UNAIDS. Global partnership for action to eliminate all forms of HIV-related stigma and discrimination. 2018. https://www.unaids.org/en/resources/documents/2018/global-partnership-hiv-stigma-discrimination. Accessed 28 May 2022.

  11. Edelman EJ, Lunze K, Cheng DM, Lioznov DA, Quinn E, Gnatienko N, et al. HIV stigma and substance use among HIV-positive russians with risky drinking. AIDS Behav. 2017;21(9):2618–27.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Turan B, Budhwani H, Fazeli PL, Browning WR, Raper JL, Mugavero MJ, et al. How does stigma affect people living with HIV? The mediating roles of internalized and anticipated HIV stigma in the effects of perceived community stigma on health and psychosocial outcomes. AIDS Behav. 2017;21(1):283–91.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Budhwani H, Yigit I, Ofotokun I, Konkle-Parker DJ, Cohen MH, Wingood GM, et al. Examining the relationships between experienced and anticipated stigma in health care settings, patient-provider race concordance, and trust in providers among women living with HIV. AIDS Patient Care STDS. 2021;35(11):441–8.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Kiriazova T, Postnov O, Bingham T, Myers J, Flanigan T, Vitek C, et al. Patient and provider perspectives inform an intervention to improve linkage to care for HIV patients in Ukraine. BMC Health Serv Res. 2018;18(1):58.

    Article  PubMed  PubMed Central  Google Scholar 

  15. DeHovitz J, Uuskula A, El-Bassel N. The HIV epidemic in Eastern Europe and Central Asia. Curr HIV/AIDS Rep. 2014;11(2):168–76.

    Article  PubMed  Google Scholar 

  16. Gesesew HA, Tesfay Gebremedhin A, Demissie TD, Kerie MW, Sudhakar M, Mwanri L. Significant association between perceived HIV related stigma and late presentation for HIV/AIDS care in low and middle-income countries: a systematic review and meta-analysis. PLoS ONE. 2017;12(3):e0173928.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Allen A, Zaviryukha I, Kiriazova T, Shenoi S, Rozanova J. The lived experience of a newly diagnosed older person with HIV in Ukraine. Qual Health Res. 2021;31(12):2290–303.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Loutfy M, Johnson M, Walmsley S, Samarina A, Vasquez P, Hao-Lan H, et al. The association between HIV disclosure status and perceived barriers to care faced by women living with HIV in Latin America, China, Central/Eastern Europe, and Western Europe/Canada. AIDS Patient Care STDS. 2016;30(9):435–44.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Morrison SD, Banushi VH, Sarnquist C, Gashi VH, Osterberg L, Maldonado Y, et al. Barriers to care and current medical and social needs of HIV-positive patients in Albania. Cent Eur J Public Health. 2011;19(2):91–7.

    Article  PubMed  Google Scholar 

  20. Ekstrand ML, Bharat S, Srinivasan K. HIV stigma is a barrier to achieving 90-90-90 in India. Lancet HIV. 2018;5(10):e543–5.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Bailey H, Cruz MLS, Songtaweesin WN, Puthanakit T. Adolescents with HIV and transition to adult care in the Caribbean, Central America and South America, Eastern Europe and Asia and Pacific regions. J Int AIDS Soc. 2017;20(Suppl 3):21475.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Hall A, Joseph O, Devlin S, Kerman J, Schmitt J, Ridgway JP, et al. “That same stigma… that same hatred and negativity:” a qualitative study to understand stigma and medical mistrust experienced by people living with HIV diagnosed with COVID-19. BMC Infect Dis. 2021;21(1):1066.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  23. Politico. EATG rapid assessment: COVID-19 crisis’ impact on PLHIV and communities most affected by HIV. 2020. https://www.politico.eu/wp-content/uploads/2020/04/EATG-Rapid-Assessment-COVID19-1-.pdf. Accessed 3 Jun 2022.

  24. Johnson M, Samarina A, Xi H, Valdez Ramalho Madruga J, Hocqueloux L, Loutfy M, et al. Barriers to access to care reported by women living with HIV across 27 countries. AIDS Care. 2015;27(10):1220–30.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Kontomanolis EN, Michalopoulos S, Gkasdaris G, Fasoulakis Z. The social stigma of HIV-AIDS: society’s role. HIV AIDS (Auckl). 2017;9:111–8.

    PubMed  Google Scholar 

  26. Ahn JV, Bailey H, Malyuta R, Volokha A, Thorne C, Ukraine Cohort of HIV-infected Childbearing Women in EuroCoord. Factors associated with non-disclosure of HIV status in a cohort of childbearing HIV-positive women in Ukraine. AIDS Behav. 2016;20(1):174–83.

    Article  PubMed  Google Scholar 

  27. Rzeszutek M, Gruszczynska E, Pieta M, Malinowska P. HIV/AIDS stigma and psychological well-being after 40 years of HIV/AIDS: a systematic review and meta-analysis. Eur J Psychotraumatol. 2021;12(1):1990527.

    Article  PubMed  PubMed Central  Google Scholar 

  28. Lo Hog Tian JM, Watson JR, Ibanez-Carrasco F, Tran B, Parsons JA, Maunder RG, et al. Impact of experienced HIV stigma on health is mediated by internalized stigma and depression: results from the people living with HIV stigma index in Ontario. BMC Public Health. 2021;21(1):1595.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Durteste M, Kyselyova G, Volokha A, Judd A, Thorne C, Cortina-Borja M, et al. Anxiety symptoms and felt stigma among young people living with perinatally or behaviourally-acquired HIV in Ukraine: a cross-sectional survey. PLoS ONE. 2019;14(1):e0210412.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  30. HIV Justice Network. Romania. 2020. https://www.hivjustice.net/country/ro/. Accessed 11 Oct 2022.

  31. HIV Justice Network. Estonia. 2020. https://www.hivjustice.net/country/ee/. Accessed 11 Oct 2022.

  32. HIV Justice Network. Belarus. 2021. https://www.hivjustice.net/country/by/. Accessed 11 Oct 2022.

  33. HIV Justice Network. Armenia. 2020. https://www.hivjustice.net/country/am/. Accessed 11 Oct 2022.

  34. HIV Justice Network. Latvia. 2020. https://www.hivjustice.net/country/lv/. Accessed 11 Oct 2022.

  35. HIV Justice Network. Slovenia. 2020. https://www.hivjustice.net/country/si/. Accessed 11 Oct 2022.

  36. UNAIDS. Parental consent is required in the majority of countries worldwide. 2019. https://www.unaids.org/en/resources/presscentre/featurestories/2019/april/20190415_gow_parental-consent. Accessed 3 Jun 2022.

  37. Bromberg DJ, Tate MM, Alaei A, Rozanova J, Karimov S, Saidi D, et al. Who are you and what are you doing here? Social capital and barriers to movement along the HIV care cascade among Tajikistani migrants with HIV to Russia. AIDS Behav. 2021;25(10):3115–27.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Hayes R, Pebody R. HIV treatment and health care for refugees from Ukraine. AIDSMAP. 2022. https://www.aidsmap.com/about-hiv/hiv-treatment-and-health-care-refugees-ukraine. Accessed 28 Jun 2022.

  39. Baral S, Beyrer C, Muessig K, Poteat T, Wirtz AL, Decker MR, et al. Burden of HIV among female sex workers in low-income and middle-income countries: a systematic review and meta-analysis. Lancet Infect Dis. 2012;12(7):538–49.

    Article  PubMed  Google Scholar 

  40. Cairns G. Stigma, access and testing: why HIV is still rising in Europe. AIDSMAP. 2018. https://www.aidsmap.com/news/dec-2018/stigma-access-and-testing-why-hiv-still-rising-europe. Accessed 4 Jun 2022.

  41. Poteat T, Scheim A, Xavier J, Reisner S, Baral S. Global epidemiology of HIV infection and related syndemics affecting transgender people. J Acquir Immune Defic Syndr. 2016;72(Suppl 3):210–9.

    Article  Google Scholar 

  42. Takacs J, Kelly JA, Toth PT, Mocsonaki L, Amirkhanian YA. Effects of stigmatization on gay men living with HIV/AIDS in a central-eastern European context: a qualitative analysis from Hungary. Sex Res Social Policy. 2013;10(1):24–34.

    Article  CAS  PubMed  Google Scholar 

  43. Kiriazova T, Lunze K, Raj A, Bushara N, Blokhina E, Krupitsky E, et al. “It is easier for me to shoot up”: stigma, abandonment, and why HIV-positive drug users in Russia fail to link to HIV care. AIDS Care. 2017;29(5):559–63.

    Article  PubMed  Google Scholar 

  44. Lelutiu-Weinberger C, Rendina HJ, Mirandola M, Gios L, Folch C, Rafila A, et al. The role of gay-related stigma in HIV-risk behavior among sexual minority men in Europe. AIDS Behav. 2019;23(3):684–94.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Ross MW, Rosser BR, Neumaier ER, Positive Connections Team. The relationship of internalized homonegativity to unsafe sexual behavior in HIV-seropositive men who have sex with men. AIDS Educ Prev. 2008;20(6):547–57.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Brown MJ, Adeagbo O. HIV and aging: double stigma. Curr Epidemiol Rep. 2021;8(2):72–8.

    Article  PubMed  PubMed Central  Google Scholar 

  47. Reinschmidt L. Regulation of prostitution in Bulgaria, Romania and Czech Republic. 2016. https://www.beobachtungsstelle-gesellschaftspolitik.de/f/958037694b.pdf. Accessed 21 Sep 2022.

  48. Stannah J, Dale E, Elmes J, Staunton R, Beyrer C, Mitchell KM, et al. HIV testing and engagement with the HIV treatment cascade among men who have sex with men in Africa: a systematic review and meta-analysis. Lancet HIV. 2019;6(11):e769–87.

    Article  PubMed  PubMed Central  Google Scholar 

  49. DeBeck K, Cheng T, Montaner JS, Beyrer C, Elliott R, Sherman S, et al. HIV and the criminalisation of drug use among people who inject drugs: a systematic review. Lancet HIV. 2017;4(8):e357–74.

    Article  PubMed  PubMed Central  Google Scholar 

  50. Lyons CE, Schwartz SR, Murray SM, Shannon K, Diouf D, Mothopeng T, et al. The role of sex work laws and stigmas in increasing HIV risks among sex workers. Nat Commun. 2020;11(1):773.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  51. Andersson GZ, Reinius M, Eriksson LE, Svedhem V, Esfahani FM, Deuba K, et al. Stigma reduction interventions in people living with HIV to improve health-related quality of life. Lancet HIV. 2020;7(2):e129–40.

    Article  PubMed  Google Scholar 

  52. Calabrese SK, Mayer KH. Stigma impedes HIV prevention by stifling patient-provider communication about U = U. J Int AIDS Soc. 2020;23(7):e25559.

    Article  PubMed  PubMed Central  Google Scholar 

  53. Choi JP, Seo BK. HIV-related stigma reduction in the era of undetectable equals untransmittable: the South Korean perspective. Infect Chemother. 2021;53(4):661–75.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Coyne R, Noone C. Investigating the effect of undetectable = untransmittable message frames on HIV stigma: an online experiment. AIDS Care. 2022;34(1):55–9.

    Article  PubMed  Google Scholar 

  55. Rivera AV, Carrillo SA, Braunstein SL. Prevalence of U = U awareness and its association with anticipated HIV stigma among low-income heterosexually active black and latino adults in New York City, 2019. AIDS Patient Care STDS. 2021;35(9):370–6.

    Article  PubMed  Google Scholar 

  56. Schweitzer AM, Mihale S, Romania. Baylor Black Seas Foundation. HIVOutcomes. 2021. https://hivoutcomes.eu/case_study/romania-baylor-black-sea-foundation/. Accessed 17 Jul 2022.

  57. Wanjala SW, Too EK, Luchters S, Abubakar A. Psychometric properties of the Berger HIV stigma scale: a systematic review. Int J Environ Res Public Health. 2021;18(24):13074.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  58. Bahar Z, Cal A, Beser A, Cavusoglu F, Deveci A, Badur S, et al. A study on the adaptation of the HIV/AIDS-related stigma scale into Turkish. Perspect Psychiatr Care. 2022;58(2):509–17.

    Article  PubMed  Google Scholar 

  59. Yildiz MI, Basar K, Caman OK, Inkaya AC. The reliability and validity of the Turkish form of Berger HIV stigma scale. Noro Psikiyatr Ars. 2021;58(4):292–9.

    PubMed  PubMed Central  Google Scholar 

  60. Kagiura F, Fujii T, Kihana N, Maruyama E, Shimoji Y, Kakehashi M. Brief HIV stigma scale for Japanese people living with HIV: validation and restructuring using questionnaire survey data. AIDS Care. 2020;32(Suppl 1):1–9.

    Article  PubMed  Google Scholar 

  61. Siegler AJ, Wiatrek S, Mouhanna F, Amico KR, Dominguez K, Jones J, et al. Validation of the HIV pre-exposure prophylaxis stigma scale: performance of Likert and semantic differential scale versions. AIDS Behav. 2020;24(9):2637–49.

    Article  PubMed  PubMed Central  Google Scholar 

  62. Wagner AC, Hart TA, McShane KE, Margolese S, Girard TA. Health care provider attitudes and beliefs about people living with HIV: initial validation of the Health Care Provider HIV/AIDS Stigma Scale (HPASS). AIDS Behav. 2014;18(12):2397–408.

    Article  PubMed  Google Scholar 

  63. Feyissa GT, Lockwood C, Woldie M, Munn Z. Reducing HIV-related stigma and discrimination in healthcare settings: a systematic review of quantitative evidence. PLoS ONE. 2019;14(1):e0211298.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  64. Krongauz V, Katsarolis I, Newman J. A cross-functional approach to understanding and combatting stigma for people living with HIV (PLWH) in Southern and Eastern Europe. Poster session presented at: Lisbon Fast-Track Cities, 20–22 Oct 2021, Lisbon, Portugal.

  65. Lofgren SM, Kigozi J, Natala NG, Tsui S, Arinda A, Akinyange V, et al. Can COVID-19 changes reduce stigma in African HIV clinics? Lancet HIV. 2022;9(5):e304–5.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  66. Statista. Average daily time spent watching television per capita in Central and Eastern Europe from 2011 to 2021. 2021. https://0-www-statista-com.brum.beds.ac.uk/statistics/1016060/daily-tv-consumption-in-central-and-eastern-europe/. Accessed 29 May 2022.

  67. Statista. Smartphone penetration rate in selected Central and Eastern European countries in 2022. 2022. https://0-www-statista-com.brum.beds.ac.uk/statistics/1134059/smartphone-reach-in-cee-region/. Accessed 4 Aug 2022.

  68. Step MM, Knight K, McMillen Smith J, Lewis SA, Russell TJ, Avery AK. Positive peers mobile application reduces stigma perception among young people living with HIV. Health Promot Pract. 2020;21(5):744–54.

    Article  PubMed  Google Scholar 

  69. Lightner JS, Rajabiun S, Cabral HJ, Flaherty J, Shank J, Brooks R. Associations of internalized and anticipated HIV stigma with returning to work for persons living with HIV. PLoS ONE. 2021;16(6):e0252783.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  70. Rossi SL, Sereda Y, Luoma JB, Pavlov N, Toussova O, Vasileva J, et al. Addressing intersectional stigma as a care barrier for HIV-positive people who inject drugs: design of an RCT in St. Petersburg, Russia. Contemp Clin Trials Commun. 2021;24:100861.

    Article  PubMed  PubMed Central  Google Scholar 

  71. Beyrer C, Crago A-L, Bekker L-G, Butler J, Shannon K, Kerrigan D, et al. An action agenda for HIV and sex workers. Lancet. 2015;385(9964):287–301.

    Article  PubMed  Google Scholar 

  72. Friedland BA, Sprague L, Nyblade L, Baral SD, Pulerwitz J, Gottert A, et al. Measuring intersecting stigma among key populations living with HIV: implementing the people living with HIV Stigma Index 2.0. J Int AIDS Soc. 2018;21(Suppl 5):e25131.

    Article  PubMed  PubMed Central  Google Scholar 

  73. Friedland BA, Gottert A, Hows J, Baral SD, Sprague L, Nyblade L, et al. The people living with HIV stigma index 2.0: generating critical evidence for change worldwide. AIDS. 2020;34(Suppl 1):5–18.

    Article  Google Scholar 

  74. Kerrigan D, Karver TS, Barrington C, Davis W, Donastorg Y, Perez M, et al. Development of the experiences of Sex Work Stigma Scale using item response theory: implications for research on the social determinants of HIV. AIDS Behav. 2021;25(Suppl 2):175–88.

    Article  PubMed  PubMed Central  Google Scholar 

  75. Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348:g1687.

    Article  PubMed  Google Scholar 

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Acknowledgements

The authors thank Jamie Casswell PhD (ORCID: 0000-0003-1960-8238) formerly of PharmaGenesis London, London, UK, for providing medical writing support, which has been funded by Gilead Sciences Europe Ltd, Uxbridge, UK, in accordance with the Good Publications Practice 2022 (GPP 2022) guidelines (https://www.ismpp.org/gpp-2022).

Funding

Gilead Sciences Europe Ltd, Uxbridge, UK, provided funding for medical writing support.

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Author notes

  1. Ana-Maria Schweitzer, Arian Dišković, Veronica Krongauz, Julie Newman, Janez Tomažič, and Nina Yancheva contributed equally to the work.

Authors and Affiliations

  1. Baylor Black Sea Foundation, Constanta, Romania

    Ana-Maria Schweitzer

  2. Croatian Association for HIV and Viral Hepatitis (HUHIV), Zagreb, Croatia

    Arian Dišković

  3. European Distributor Markets, Medical Department, Gilead Sciences, Uxbridge, UK

    Veronica Krongauz

  4. HIV Strategic Implementation & Franchise, Global Medical Affairs, Gilead Sciences, Melbourne, Australia

    Julie Newman

  5. Clinic for Infectious Diseases and Febrile Illnesses, University Medical Centre Ljubljana, Ljubljana, Slovenia

    Janez Tomažič

  6. Department for AIDS, Specialized Hospital for Active Treatment of Infectious and Parasitic Diseases, Sofia, Bulgaria

    Nina Yancheva

  7. Department for Infectious Diseases, Parasitology and Tropical Medicine, Medical University of Sofia, Sofia, Bulgaria

    Nina Yancheva

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  1. Ana-Maria Schweitzer
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AS, AD, VK, JN, JT, and NY contributed to the concept and content development of the manuscript and approved the final draft.

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Correspondence to Ana-Maria Schweitzer.

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Schweitzer, AM., Dišković, A., Krongauz, V. et al. Addressing HIV stigma in healthcare, community, and legislative settings in Central and Eastern Europe. AIDS Res Ther 20, 87 (2023). https://0-doi-org.brum.beds.ac.uk/10.1186/s12981-023-00585-1

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Keywords

AIDS Research and Therapy

ISSN: 1742-6405

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