Congenital syphilis remains a significant public health threat in Australia, warranting national efforts to reduce syphilis incidence overall, focusing on women of reproductive age. To identify priority actions to eliminate congenital syphilis, ASHM convened a national multidisciplinary roundtable with attendance from organisations, colleges, and bodies across the healthcare sector with a focus on Aboriginal and Torres Strait Islander peoples' health, sexual and reproductive health, antenatal health, primary care, pathology, and pharmacy, as well as research institutes and community organisations. This position statement outlines the immediate, short-term and long-term actions identified by roundtable participants to eliminate congenital syphilis in Australia.
INTRODUCTION:The Undetectable = Untransmittable (U = U) message has failed to reach many people living with HIV (PLHIV) and their communities despite evidence of its favourable impacts. DISCUSSION:We describe and contextualize six global research priorities related to U = U, which focus on: (1) examining the effects of U = U messaging on health and economic outcomes; (2) illuminating and addressing barriers to U = U communication among healthcare providers, policymakers and other stakeholders; (3) expanding U = U research to include all key populations disproportionately affected by HIV; (4) addressing limited and inequitable access to information and resources; (5) determining how to optimally communicate about U = U in the context of evolving scientific knowledge and guidelines; and (6) collaborating on parallel studies across countries to improve comparability of study findings and identify cross-cultural differences. CONCLUSIONS:Future research targeting these six priorities is needed to guide effective messaging about U = U in healthcare settings and public health programmes throughout the world. Ultimately, bridging existing gaps in U = U awareness, understanding and acceptance can enable PLHIV and others to reap the benefits associated with this valuable message.
Objectives To seek consensus among global experts on concepts, measures and approaches to guide national and global action to address HIV-related stigma and formulate a call to action. This outlines priorities to unite actors in more effectively responding to and resourcing efforts to address HIV-related stigma.Design An adapted Delphi consensus-building process using two rounds of online questionnaires.Setting Online questionnaires sent to a global expert panel.Participants 50 global experts on HIV-related stigma and discrimination representing sectors including civil society, people living with HIV and key populations, research and academia, clinical practice, law, non-profit organisations, the United Nations, and policy and donor organisations.Results The panel reached consensus on 55 points relating to the 12 broad themes extracted from the evidence base. These comprised the importance of addressing HIV-related stigma at scale; HIV-related stigma terms and definitions; Frameworks; Programming and approaches; Community leadership in HIV-related stigma-reduction implementation; Intersectional stigma and discrimination; Stigma and discrimination measures and assessment scales; Monitoring and evaluation; Stakeholder and community participation in monitoring and evaluation; Knowledge gaps and research needs; Funding and Commitment calls. From these, a consensus statement and call to action were formulated on priorities for strong political and financial commitments by all countries to reduce and mitigate HIV-related stigma and achieve global HIV targets adopted in 2021.Conclusions This study illustrated that global experts across sectors consider that action is needed to support the three critical enablers of the HIV response—society, systems and services—to ensure that HIV services are non-discriminatory and person-centred. The importance of attention and action to reduce stigma is critical in the current geopolitical and funding crisis affecting HIV and global health.
2023 marked the 75th anniversary of the UN's Universal Declaration of Human Rights. The Universal Declaration articulates an inspiring vision of a world that is just, equitable, tolerant, and strategically focused on actions to address the most vulnerable and marginalised populations—a counterpoint to the atrocities, repression, and colonialism that characterised much of the 20th century. Endorsement of the Universal Declaration was not commensurate with reality in many cases—especially because numerous signatories still had colonies and because Cold War politics resulted in divisions of social, economic, and political rights into separate international covenants—but it nevertheless inspired decades of progress.
Background People living with HIV continue to face laws, policies, and practices that impact their potential for travel and migration. These laws include: mandatory HIV testing and involuntary disclosure of HIV; lack of access to affordable HIV-related health care, treatment and counselling during the migration process; deportation of foreign nationals living with HIV; and restrictions on the length of stays. Methods HIV migration laws were the topic of a half-day community forum held as part of the 12th International AIDS Society Conference on HIV Science held in Brisbane, Australia, in July 2023. Over 150 delegates attended and, after a series of presentations, delegates were invited to participate in structured, facilitated conversations about issues related to policy, health and law concerning migration of people living with HIV. In this paper, we report on key themes from those discussions and identify areas for ongoing investigation. Results Advocates recommended the removal of unfair and unjust migration laws and policies that contribute to HIV stigma and discrimination; updated migration policies that reflect the current context and cost of biomedical approaches to HIV management and prevention; expanded and equitable access to HIV-related care regardless of migration or residency status; and the development of advocacy networks to promote changes to migration policies. Conclusions Laws limiting the migration of people living with HIV actively discourage individuals from seeking HIV testing, treatment and care. Ultimately, restrictive migration laws and policies undermine global efforts to end AIDS as a public health concern and to virtually eliminate HIV transmission by 2030.
Background Launched in 2016 by Prevention Access Campaign, the ‘Undetectable = Untransmittable’ (U=U) campaign empowers people living with HIV to live full social, sexual and reproductive lives, dismantle stigma, promote increased treatment access, and advocate for updated HIV guidelines. Methods Key priorities for promoting improvements to community-centred, evidence-informed U=U policy and research were the focus of a half-day global roundtable held in 2023 alongside the 12th International AIDS Society Conference in Brisbane, Australia. After a series of presentations, experts in U=U research, policymaking, advocacy and HIV clinical care participated in facilitated discussions, and detailed notes were taken on issues related to advancing U=U policy and research. Results Expert participants shared that knowledge and trust in U=U remains uneven, and is largely concentrated among people living with HIV, particularly those connected to gay and bisexual networks. It was agreed that there is a need to ensure all members of priority populations are explicitly included in U=U policies that promote U=U. Participants also identified a need for policymakers, healthcare professionals, advocates and researchers to work closely with community-based organisations to ensure the U=U message is relevant, useful, and utilised in the HIV response. Adopting language, such as ‘zero risk’, was identified as crucial when describing undetectable viral load as an effective HIV prevention strategy. Conclusion U=U can have significant benefits for the mental and physical wellbeing of people living with HIV. There is an urgent need to address the structural barriers to HIV care and treatment access to ensure the full benefits of U=U are realised.
A strong global commitment exists to eliminate HIV-related stigma and discrimination, and multiple strategies to reduce or eliminate stigma and discrimination have been tried. Using a PICOTS framework and applying the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) criteria, we undertook a systematic review to determine the success of interventions aiming to address internalized stigma, stigma and discrimination in healthcare, and at the legal or policy level, and to identify their critical success factors. Random effects meta-analyses summarized results wherever possible. We carried out a component analysis to identify and characterize successful interventions. Internalized stigma interventions were diverse: across all studies, we found a reduction of stigma but it was not statistically significant [standardized mean difference (SMD) 0.56; confidence interval (CI) 0.31-1.02; 17 studies). For interventions to address stigma and discrimination in healthcare settings, effect estimates varied considerably but most studies showed positive effects (SMD 0.71; CI 0.60-0.84, 8 studies). Boosted regression analyses found that a combined approach comprising education, counseling, community participation, support person, and access to a HIV specialist often yielded success. Studies of efforts to address stigma and discrimination through law and policy documented, mostly qualitatively, the effect of court cases and directives. Across a range of settings and populations, promising interventions have been identified that, through diverse pathways, have positively impacted the types of stigma and discrimination studied. This evidence base must be built upon and brought to scale to help reach global HIV-related targets and, most importantly, improve the health and quality of life of people with HIV.
Introduction HIV-related internalized stigma remains a major contributor to challenges experienced when accessing and providing HIV diagnosis, care and treatment services. It is a key barrier to effective prevention, treatment and care programs. This study investigated experiences of internalized stigma among people living with HIV in Malawi. Methodology A participatory cross-sectional study design of participants from eight districts across the three administrative regions of Malawi. Data were collected using Key Informant Interviews (n = 22), Focus Group Discussions (n = 4) and life-stories (n = 10). NVIVO 12 software was used for coding applying both deductive and inductive techniques. Health Stigma and Discrimination Framework was used as a theoretical and analytical framework during data analysis. Results Overt forms of stigma and discrimination were more recognizable to people living with HIV while latent forms, including internalized stigma, remained less identifiable and with limited approaches for mitigation. In this context, manifest forms of HIV-related stigma intersected with latent forms of stigma as people living with HIV often experienced both forms of stigma concurrently. The youths, HIV mixed-status couples and individuals newly initiated on ART were more susceptible to internalized stigma due to their lack of coping mechanism, unavailability of mitigation structures, and lack of information. Broadly, people living with HIV found it difficult to identify and describe internalized stigma and this affected their ability to recognize it and determine an appropriate course of action to deal with it. Conclusion Understanding the experiences of internalized stigma is key to developing targeted and context specific innovative solutions to this health problem.
More than 40 years into the global HIV pandemic, we are still grappling with HIV-related stigma and its intersections with other marginalized identities, health conditions and social practices. HIV-related stigma, conceptualized as the devaluing, mistreatment and constrained access to power and opportunities experienced by people living with and associated with HIV, remains a critical concern inhibiting the HIV response [1]. Indeed, the UNAIDS Global AIDS Strategy explicitly describes the goal that "people living with HIV, key populations and people at risk of HIV enjoy human rights, equality and dignity, free of stigma and discrimination" to realize optimal HIV outcomes [2]. The inclusion of commitments towards eliminating HIV-related stigma and discrimination within the Political Declaration agreed at the 2021 United Nations High-Level Meeting on HIV/AIDS for the first time also signals a conducive global political environment for action at scale [3]. The time is now to renew and innovate responses to HIV-related stigma, including taking the steps needed to ensure an enabling global policy environment. Reducing stigma and alleviating its harmful effects is an essential ingredient of any effective national HIV response. Approaches can be informed by a focus on human rights, agency and intersectionality, which may be understood as a "discourse about identity that acknowledges how identities are constructed through the intersection of multiple dimensions" [4] and captures the complexities of social identities and social power. Contextual differences can be significant, and as evident from the work of the Global Partnership for Action to Eliminate all forms of HIV-Related Stigma and Discrimination, it can be useful to focus on understanding how and where stigma manifests itself in specific settings for diverse communities in different geographies [5]. To succeed in reducing or alleviating its harmful effects, efforts must remain situated firmly within increased human rights realization for people living with and most affected by HIV. Research that focuses on stigma processes and their harmful impacts can also attend to the ways in which people exert individual and collective agency to resist and dismantle stigma, and form solidarity. A dual focus on stigma's harms and the ways in which people and communities navigate stigma can avoid perpetrating binary or simplistic notions of powerlessness, vulnerability and passivity, and instead calls attention to the nuances and fluidity of power dynamics [6]. A focus on "whole" selves can be informed by intersectionality theory to take into account interlocking systems of oppression—including stigma and discrimination [7, 8]. More could be learned from other sectors regarding how to understand and address HIV-related stigma, including social ecologies of resilience [9, 10], activism [11] and civic engagement [12], community mobilization [13], collective impact [14], peer support and solidarity among persons living with HIV [15], and collective and self-efficacy [16]. This Supplement on Getting to the heart of stigma across the HIV continuum of care aims to draw attention to HIV-related and intersecting stigma and discrimination across the HIV prevention and care continuum. The articles contribute to consolidating the evidence base and provide a state-of-the field update about the latest concepts, innovative research methods and strategies to reduce stigma and/or ameliorate its harmful effects. Articles cover a variety of lived experiences of stigma; and at times, include examples of resilience, good practice and community leadership. Language is important, and the authors whose work is published in this Supplement have been encouraged to follow the latest terminology guidance from UNAIDS and to adopt person-centred language, such as avoiding acronyms and using language that puts the person first (see, e.g., the People First Charter). The language used in research may in fact result in practice changes to engage person-centred language in social and healthcare encounters [17]. Several papers in the Supplement include important methodological insights about the co-creation of research and co-production of knowledge, including with marginalized groups (see Brown et al. [18], Gamarel et al. [19], Tun et al. [20] and Collier et al. [21]). A partnership model between researchers and marginalized groups in the co-creation of knowledge is increasingly influencing stigma research and is reflected in some of the studies in this Supplement. Such approaches foster knowledge production for greater impact and social change that are led by community researchers and/or more grounded in lived experiences. It is our hope that this Supplement informs efforts to address stigma and discrimination and ultimately improving quality of life and access to healthcare for people living with and most affected by HIV. Studies in this issue examine the impact of HIV-related stigma on the HIV prevention cascade. For instance, Hargreaves et al. [22] explore the association between stigma and HIV incidence through a nestled study within the PopART trials in Zambia and South Africa. They found no evidence of an association between HIV stigma and HIV incidence in the trials, suggesting that efforts to reduce new HIV infections and improve HIV prevention and treatment programmes may fail if HIV stigma is considered in isolation and are not complemented by a more holistic approach. In another paper, Atkins et al. [23] evaluated the factor structure of a pre-exposure prophylaxis (PrEP)-related stigma scale as part of a larger prospective cohort study nested within Kenya's Jilinde programme. They identified four dimensions of PrEP-related stigma; and the scale demonstrated strong internal consistency, was positively correlated with depressive symptoms and negatively correlated with uptake of HIV services. Prevention cascade stigma research and practice should consider PrEP stigma alongside other prevention barriers. Other papers focus on HIV-related stigma impacts among people living with HIV. Johnson-Peretz et al. [24] focus on schools in rural Africa as potential sites of stigma for young people. Authors apply a life-course framework to explore a time of critical life stage transition, finding the young people in the study were already engaged in finding ways to manage their own healthcare, while refusing to internalize stigma, and were becoming invested with greater responsibility for their own, and their families' health. Collier et al. [21] explore multi-dimensional experiences of stigma among people living with HIV and Kaposi's sarcoma in Kenya. The intersection of HIV-related, cancer-related and skin disease-related stigma was better understood using mixed-methods approaches with people living with both HIV and cancer. Other studies explore stigma within broader structural determinants of health, such as poverty. For instance, Logie et al. [25] examined both food and housing insecurity as drivers of HIV-related stigma, and present findings from a longitudinal engagement with a cohort of women living with HIV in Canada, finding resource scarcities linked with increased experiences of HIV-related stigma. Several papers in this Supplement focus on opportunities to address or reduce stigma among or for diverse groups of people. The paper by Pollack et al. [26] looks at work to reduce HIV-related stigma and discrimination in healthcare settings in Vietnam, and their findings demonstrate the effectiveness of a multi-pronged facility-level intervention. Nyblade et al. [27] suggest that in order to get to the "heart of stigma," efforts must understand and respond to both HIV and other intersecting stigma targeting sexual and gender diversity, and take a non-siloed approach to training healthcare providers. Connecting within a focus on intersectionality, structural processes of stigma and practical opportunities to address biases within the healthcare system, their paper discusses findings and curriculum adaptation for a total health facility approach for stigma reduction. From a community perspective, Tun et al. [20] focus on transgender men and women in Nigeria and discuss how provider awareness of, and respect for individual gender identity is critical for optimal delivery of HIV and other health services for Nigerian transgender men and women. Peer-support and community leadership in challenging and researching stigma is essential to contributing to the robust evidence base of what works to respond to stigma. Makoni et al. [28] provide examples of the importance of community-led monitoring in promoting accountability and better policy responses that meet the needs of the spectrum of diverse people living with and affected by HIV in Zimbabwe. Gamarel et al.'s [19] commentary proposes a status-neutral approach for research with trans communities in the United States. The authors argue that although interventions focused on PrEP or antiretroviral therapy uptake and adherence have and will continue to benefit communities, these HIV "status-segregated" interventions can perpetuate HIV stigma and other forms of oppression among those in most need of HIV programmes. They argue that segregating people into HIV prevention and HIV treatment research disrupts the organic and close kinship structures, and conclude by calling on funders to develop mechanisms that support the development and testing of HIV status-neutral interventions. Brown et al.'s [18] community-led innovation with systems thinking considers how to get to the heart of addressing stigma at scale. The authors present findings from a study adopting a systems perspective to understand how to tackle structural stigma via the Meaningful Involvement of People with HIV, while highlighting the challenges in demonstrating peer leadership from people living with HIV. The Supplement also includes papers that review conceptual frameworks and measures used to evaluate stigma, including recommendations for different scales and approaches to robustly measure stigma and track change over time. Ferguson et al. [29] present findings from a global systematic review that highlight the gaps and diversity within existing measures and conceptual frameworks to address stigma. Finally, Golub and Fiskin's [30] commentary suggests that HIV researchers and practitioners have failed to fully specify or examine the mechanisms through which HIV service implementation itself may reinforce stigma and inequity. Taken together, the articles in this Supplement offer insight into a range of health conditions, social identities, social determinants of health and life stages that shape lived experiences of stigma. It also provides insight into wide-ranging methodologies, including qualitative, quantitative, systems mapping and systematic reviews, that were employed to generate new insights into the complexity of stigma. Getting to the heart of stigma requires engagement across methods, conceptual frameworks and impacted communities to understand what factors are most important to translate research to action to advance human rights and equity. The authors acknowledge the support of Tessa Oraro-Lawrence and Kasoka Kasoka of the IAS, and all the authors and their research partners for their contribution to this Supplement. The authors declare no competing interests. The Editorial was conceptualized by LSM, CL and AC. LSM and CL wrote the first draft of the Editorial. AC and FR reviewed and contributed additional material. All authors reviewed and revised the Editorial before final submission. This work was supported from the Bill and Melinda Gates Foundation, Investment number INV-004364.
There is strong global commitment to eliminate HIV‐related stigma, and work in this area continues to evolve. Wide variation exists in frameworks and measures used.
Introduction There is strong global commitment to eliminate HIV-related stigma. Wide variation exists in frameworks and measures, and many strategies to prevent, reduce or mitigate stigma have been proposed but critical factors determining success or failure remain elusive. Methods and analysis Building on existing knowledge syntheses, we designed a systematic review to identify frameworks, measures and intervention evaluations aiming to address internalised stigma, stigma and discrimination in healthcare, and stigma and discrimination at the legal or policy level. The review addresses four key questions (KQ): KQ1: Which conceptual frameworks have been proposed to assess internal stigma, stigma and discrimination experienced in healthcare settings, and stigma and discrimination entrenched in national laws and policies? KQ2: Which measures of stigma have been proposed and what are their descriptive properties? KQ3: Which interventions have been evaluated that aimed to reduce these types of stigma and discrimination or mitigate their adverse effects and what are the effectiveness and unintended consequences? KQ4: What common ‘critical factors for success or failure’ can be identified across interventions that have been evaluated? We will search PubMed, PsycINFO, Web of Science, Universal Human Rights Index, HeinOnline, PAIS, HIV Legal Network, CDSR, Campbell Collaboration, PROSPERO and Open Science Framework. Critical appraisal will assess the source, processes and consensus finding for frameworks; COnsensus-based Standards for the selection of health Measurement Instruments criteria for measures; and risk of bias for interventions. Quality of evidence grading will apply . A gap analysis will provide targeted recommendations for future research. We will establish a compendium of frameworks, a comprehensive catalogue of available measures, and a synthesis of intervention characteristics to advance the science of HIV-related stigma. PROSPERO registration number CRD42021249348.
The study focused on the representations, processes and effects of HIV stigma for healthcare workers living with HIV within health facilities in Zambia. A descriptive study design was deployed. A total of 56 health workers and four service user participants responded to a structured questionnaire (n = 50) or took part in key informant interviews (n = 10) in five high HIV-prevalence provinces. Most participants did not disclose if they were living with HIV, except for four participants who responded to the questionnaire and were selected for being open about living with HIV. Semi-structured interviews were carried out with health workers in key government health facility positions. The questions were standardized and used a Likert scale. Descriptive statistical and thematic analyses were applied to the data. Results show that antiretroviral treatment (ART) has an impact on stigma reduction. Almost half the participants agreed that treatment is reducing levels of HIV stigma. However, fears of exposure of HIV status and labelling and judgemental attitudes persist. No comprehensive stigma reduction policies and guidelines in healthcare facilities were mentioned. Informal flexible systems to deliver HIV services were in place for health workers living with HIV, illustrating how stigma can be quietly navigated. Lack of confidentiality in healthcare facilities plays a role in fuelling disclosure issues and hampering access to testing and treatment. Stigma reduction training needs standardization. Further, codes of conduct for ‘stigma-free healthcare settings’ should be developed.
The rapid development of safe and effective COVID-19 vaccines has been an unprecedented scientific achievement and offers a promise for a healthy post-pandemic future. However, inequitable vaccine access has jeopardised that vision, and our global governance institutions have failed to anticipate, prevent, or redress this inequality. As of March 21, 2021, 78% of 447 million deployed doses of COVID-19 vaccines were in only ten countries.1,2 Nearly a quarter of the world's population might not have access to these vaccines before 2022.
Introduction Integration of HIV/AIDS with reproductive health (RH) services can increase the uptake and efficiency of services, but gaps in knowledge remain about the practice of integration, particularly how provision can be expanded and performance enhanced. We assessed the extent and nature of service integration in public sector facilities in four districts in Kenya. Methods Between 2009 and 2012, client flow assessments were conducted at six time points in 24 government facilities, purposively selected as intervention or comparison sites. A total of 25 539 visits were tracked: 15270 in districts where 6 of 12 facilities received an intervention to strengthen HIV service integration with family planning (FP); and 10266 visits in districts where half the facilities received an HIV-postnatal care intervention in 2009-2010. We tracked the proportion of all visits in which: (1) an HIV service (testing, counselling or treatment) was received together with an RH service (FP counselling or provision, antenatal care, or postnatal care); (2) the client received HIV counselling. Results Levels of integrated HIV-RH services and HIV counselling were generally low across facilities and time points. An initial boost in integration was observed in most intervention sites, driven by integration of HIV services with FP counselling and provision, and declined after the first follow-up. Integration at most sites was driven by temporary rises in HIV counselling. The most consistent combination of HIV services was with antenatal care; the least common was with postnatal care. Conclusions These client flow data demonstrated a short-term boost in integration, after an initial intervention with FP services providing an opportunity to expand integration. Integration was not sustained over time highlighting the need for ongoing support. There are multiple opportunities for integrating service delivery, particularly within antenatal, FP and HIV counselling services, but a need for sustained systems and health worker support over time.
Purpose: Working with health providers to reduce HIV stigma in the healthcare setting is an important strategy to improve service utilization and quality of care, especially for young people who are sexually active before marriage, are sexual minorities, or who sell sex. A stigma reduction training program for health providers in Bangladesh was evaluated.Methods: A cohort of 300 healthcare providers were given a self-administered questionnaire, then attended a 2-day HIV and sexual and reproductive health and rights training (including a 90-minute session on stigma issues). Six months later, the cohort repeated the survey and participated in a 1-day supplemental training on stigma, which included reflection on personal values and negative impacts of stigma. A third survey was administered 6 months later. A cross-sectional survey of clients age 15-24 years was implemented before and after the second stigma training to assess client satisfaction with services.Results: Provider agreement that people living with HIV should be ashamed of themselves decreased substantially (35.3%-19.7%-16.3%; p < .001), as did agreement that sexually active young people (50.3%-36.0%-21.7%; p < .001) and men who have sex with men (49.3%-38.0%-24.0%; p < .001) engage in "immoral behavior." Young clients reported improvement in overall satisfaction with services after the stigma trainings (63.5%-97.6%; p < .001).Conclusions: This study indicates that a targeted stigma reduction intervention can rapidly improve provider attitudes and increase service satisfaction among young people. More funding to scale up these interventions is needed. (C) 2016 Society for Adolescent Health and Medicine. All rights reserved.
Sexual health and access to services are a pressing need for young people. This article introduces Link Up, a 3-year project in three African and two Asian countries, to enable and scale up access to integrated HIV services and sexual and reproductive health and rights for marginalized young people. The young people we worked with in this project included young men who have sex with men, young sex workers, young people who use drugs, young transgender people, young homeless people, and other vulnerable young people. The research and programmatic activities of Link Up, as illustrated in this Supplement, have highlighted the importance of recognizing and engaging with diversity among young people to improve access to services and outcomes protecting their health and human rights.