SOC/758

Measures to fight stigma against HIV

OPINION

Section for Employment, Social Affairs and Citizenship

Measures to fight stigma against HIV

(Exploratory opinion at the request of the Spanish Presidency)

Rapporteur: Pietro Vittorio BARBIERI

Co-rapporteur: Nicoletta MERLO

1.Conclusions and recommendations

1.1The EESC welcomes the Spanish Presidency's initiative of setting the goal to eliminate HIV related stigma and discrimination in Europe by 2030. The issue has been neglected for too long, even though the available data unequivocally show the continuation of its harmful consequences in various parts of the world, in specific social contexts and key populations. Therefore, the EESC shares the Spanish Presidency's view that ending HIV-related stigma and discrimination should be considered one of the political priorities of the EU agenda.

1.2The EESC shares the need for a high-level declaration from the European institutions, to be presented to the European Parliament on 1 December 2023, and undertakes to support it and take part in it at every possible level, way and forum.

1.3In order to overcome stigma, discrimination and false stereotypes, the EESC considers it essential to promote awareness-raising, training and information actions, especially in schools, involving organised civil society, youth and student organisations.

1.4Identification and removal of barriers to PrEP for greater access to drugs and progress in implementing PrEP are required to reach a wider population, in order accelerate progress towards ending the AIDS epidemic by 2030. Preventive interventions such as pre- and post-exposure prophylaxis and TasP may have a significant impact on controlling HIV and other sexually transmitted infections.

1.5People with HIV must have equal opportunities for access and professional growth in the world of work. They should also be able to benefit from specific arrangements such as flexible working hours or extended leave for medical visits with guaranteed confidentiality.

1.6The EESC stresses the importance of taking specific measures for key populations: for the HIV epidemic to be effectively addressed, targeted information and institutionally implemented prevention programmes need to reach these population groups so that specific services can make contact with them proactively, possibly through non-governmental, community-based associations.

1.7In view of the fact that Ukraine has the second largest AIDS epidemic in the Eastern Europe and Central Asia region, the EESC stresses the importance for host countries to ensure continuity and free HIV testing and treatment for Ukrainian refugees, improving the chances to get tested regardless of residency status. Since most refugees are women and children, expanded testing in hospitals, primary care and community settings may be the most appropriate settings for Ukrainian refugee.

1.8Antiretroviral treatment (ART) can play a dual role in improving the health of people living with HIV and effectively prevent HIV transmission, as it is highly effective in suppressing HIV viral load.

1.9The timely diagnosis of HIV infection, the early start of therapy and retention in care (continuum of care) are the cornerstones of controlling the spread of infection. As several countries have already reached the target, the EESC calls for a more ambitious new target for all countries to be achieved by 2030, improving coverage levels to as high as 95% for testing, treatment and virological suppression.

1.10Both the continuum of care and the prevention continuum can synergistically represent a comprehensive response to combat the HIV epidemic, and should therefore be developed and implemented.

1.11The EESC calls for new and innovative strategies to improve early diagnosis and make more people aware of their infection by expanding diversified and user-friendly approaches to more widely available HIV testing such as rapid testing, community testing and self-testing, and an integrated approach to HIV and hepatitis B and C testing.

1.12Communities play vital roles in the HIV response, promoting accountability, driving prevention activism, implementing activities and contributing innovations that are crucial for sustainable progress.

1.13To sustain and accelerate progress towards achieving these goals, the EESC urges further efforts in designing and implementing new programmes to extend knowledge of the HIV-positive status and treatment coverage, to reduce the circulation of the virus and thus the transmission of HIV, and to limit grounds for discrimination such as access to employment or to financial services.

2.HIV in Europe

2.1HIV transmission remains a major public health concern affecting more than 36 million people in the world, of whom 2.3 million people live in the WHO European Region, particularly in the eastern part of the region. Nearly 107 000 people were diagnosed with HIV in the European Region in 2021, including around 17 000 in the EU/EEA. The trend in HIV diagnoses has been on the decline since 2012; a more marked decrease in HIV diagnoses was observed in 2020 and 2021 (-24%), possibly due to the effects of the COVID-19 pandemic on utilisation of health services, and/or as a result of reduced transmission due to the public health measures implemented during the period of the COVID-19 pandemic.

2.2HIV in Europe disproportionally affects populations that are socially marginalised and people whose behaviour is socially stigmatised such as: people who use intravenous drugs and their sexual partners, men who have sex with men, transgender people, sex workers, prisoners and migrants.

2.3Data document different epidemic patterns and trends across countries in the WHO European Region: the main transmission mode is sexual transmission between men in the EU/EEA and western part while heterosexual transmission and intravenous drug use were the main reported transmission modes in the eastern part of the region.

2.4Late HIV diagnosis remains a challenge for most countries in the region: more than 50% received the HIV diagnosis when the CD4 cell count was lower than 350/mmc.

3.HIV continuum of care for Ukrainian refugees

3.1Since the start of the war on 24 February 2022, more than 13.5 million people have been internally displaced or forced to flee to neighbouring countries as refugees, including people living with HIV (estimated to be between 10 000 – 30 000 people) and key populations.

3.2Ukraine is the country with the second-largest AIDS epidemic in the Eastern Europe and Central Asia region. The number of new HIV diagnoses rose from 14 240 in 2016 to 16 270 in 2019, falling slightly to 15 660 in 2020, probably due to the COVID-19 crisis. Of these, surveillance data reported 9 000-10 000 cases acquired through heterosexual contact and around 5 000 acquired through intravenous drug use.

3.3Before the start of the war, the country was making strong progress in the AIDS response: HIV care and treatment were provided for free at governmental HIV clinics throughout the country and an increasing number of people living with HIV were on antiretroviral treatment (ART). In 2021, it was estimated that out of 240 000 people living with HIV (0.6% of the Ukrainian population) more than 150 000 people were on ART (62%), and 94% of those receiving treatment were virally suppressed.

3.4In the country, UN agencies and partners on the ground such as the UNAIDS Emergency Fund, have been working closely with local authorities to reach and help people in need. More recently they have delivered humanitarian assistance to hard-hit territories in the country that have only now become accessible. A coalition of government, civil society and international organisations has been and continues to be a cornerstone of the effective HIV response in Ukraine during the war.

3.5UNAIDS will continue to support HIV prevention, testing, treatment, care and support for people across Ukraine affected by the war and people displaced by the conflict.

3.6A document from the European Centre for Disease Prevention and Control (ECDC) 1 , published in July 2022, outlines key considerations to inform decision-making and practical service implementation to maintain quality standards of HIV care to Ukrainian refugees in particular the importance for host countries to ensure continuity and free HIV testing and treatment for Ukrainian refugees, improving the chances to get tested regardless of residency status, because restricted access to ART leads to an increased risk of illness, death, emergence of resistant strains and potential onward transmission. Since most refugees are women and children, expanded testing in hospitals, primary care and community settings may be the most appropriate settings for Ukrainian refugees.

4.HIV in the world

4.1There is a strong global consensus that the tools now exist to end the AIDS epidemic. Over the last two decades, a growing number of studies in diverse settings have demonstrated that antiretroviral treatment (ART) can play a dual role in improving the health of people living with HIV (PLHIV) and effectively prevent HIV transmission (Treatment as Prevention – TasP), as it is highly effective in suppressing HIV viral load (defined as under 200 copies/mL).

4.2In recent years, a strategy has been widely established that sees the timely diagnosis of HIV infection, the early start of therapy and retention in care (continuum of care) as the cornerstones of controlling the spread of infection. In 2014 UNAIDS launched the target of 90-90-90 (90% of people with HIV diagnosed, 90% of these treated and 90% of those treated with suppressed viraemia). If these targets are met, 73% of all those living with HIV will have suppressed viral load, and people with suppressed viral load cannot pass on HIV.

4.3There is evidence that at the end of 2020 several countries, with diverse geography, income status and epidemiology, have already reached the target. Experts believe that these results could potentially show that a more ambitious new target for all countries could be achieved by 2030, improving coverage levels to as high as 95% for testing, treatment and virological suppression. To sustain and accelerate progress towards achieving these goals in the HIV epidemic response, further efforts in designing and implementing new programmes are needed to extend the knowledge of HIV-positive status and the treatment coverage (Universal Testing and Treatment [UTT] approach) to reduce the circulation of the virus and therefore the transmission of HIV. Such new programmes should not focus exclusively on standard measures to be applied, but should also be implemented according to the needs and the specific demands of people living with HIV.

4.4More recently, an approach similar to the HIV care continuum, the HIV continuum of prevention, is being increasingly proposed, aimed at the population at risk of HIV infection to ensure that individuals remain uninfected by HIV. The HIV prevention continuum builds on HIV testing as its foundation followed by linking HIV-uninfected persons to prevention services, retention in services and adherence to services to receive ongoing risk reduction counselling and consistent condom use to prevent HIV acquisition and transmission. Retention is also important to ensure repeat HIV testing and early diagnosis of HIV infection if HIV acquisition occurs. Newly infected individuals must be promptly connected to HIV care and treatment and other prevention methods including partner testing, condom use and antiretroviral drugs for prevention. Several studies have shown that at the population level both the continuum of care and that of prevention can synergistically represent a complete response to fight the HIV epidemic.

4.5New and innovative strategies are required to improve early diagnosis and make more people aware of their infection by expanding diversified and user-friendly approaches to more widely available HIV testing such as rapid testing, community testing and self-testing, and an integrated approach to HIV and hepatitis B and C testing.

4.6The WHO recommends a comprehensive package of health services for HIV prevention with a particular focus on reaching key populations. Of particular relevance is the integration of HIV prevention services with services for sexual and reproductive health, mental health, prevention and care of sexual and gender-based violence, drug dependence treatment, hepatitis C prevention and care, tuberculosis control, prison health, noncommunicable diseases and legal and social support services.

4.7The availability of different ways of accessing an HIV test can provide the opportunity for timely diagnosis to various populations vulnerable to HIV infection.

4.8UNAIDS recommends a "combination prevention" approach to HIV prevention. As no single prevention strategy is sufficient to contain the spread of the disease, the approach requires biomedical, behavioural and structural interventions that are specifically selected and tailored to suit local needs, as articulated by affected communities. And to succeed, these must be coordinated, efficient, consistent and inspired by a shared commitment to common goals.

5.Community response to HIV

5.1Historically, the role of communities of people living with HIV (PLHIV), marginalised and vulnerable groups, women and young people in HIV service delivery, research and drug development, advocacy, social and political accountability, resource mobilisation and social and human rights protection is well documented and recognised by UNAIDS 2 . The past three decades have demonstrated that communities of PLHIV and their peers are instrumental in sustaining engagement and advocacy for health equity and financing for health and ensuring that the human rights of all people are recognised and upheld. Quality and effective integration of health systems and universal healthcare can be more effectively designed, implemented and sustained with communities of PLHIV and peers at their centre. The leadership and engagement of communities have contributed directly to improved outcomes in access to HIV treatment, prevention, support and care services around the world.

5.2Communities play vital roles in the HIV response by promoting accountability, driving prevention activism, implementing activities and contributing innovations that are crucial for sustainable progress. Community-led service delivery platforms are often more effective than formal health facility-based platforms for reaching marginalised and under-served populations, especially in settings where stigma and discrimination are rife. Community-led organisations are well placed to identify gaps in services, constraints that hold back service delivery and uptake, but also opportunities to acknowledge services as part of the fundamental rights of the individual and to make them more people-centred, convenient and effective.

5.3The community (understood as the group of non-governmental associations and organisations involved in combating AIDS and in defending the rights of people with HIV on a daily basis) plays a crucial role in giving a voice to the most vulnerable and at-risk populations, and provides effective solutions to contain the HIV/AIDS epidemic. It does so to such an extent that, in 2019, the World Health Organization (UNAIDS) dedicated World AIDS Day to it (1 December) with the slogan "Communities make the difference''.

5.4Consideration should also be given to ensuring constant monitoring and carrying out impact assessments of the various health policies and legislative frameworks adopted in each Member State, through the involvement of independent and impartial actors, including with a view to bringing out best practices to be shared and proposed at European level.

5.5Even with the awareness and the objective of wanting to "normalise" the HIV-positive condition, it is recommended that each individual's privacy be respected both during contacts with health facilities for access to services and in areas relating to activities of daily life (school, work, etc.). Therefore, in all Member States the rules must be aimed at guaranteeing the protection of the fundamental rights and freedoms, as well as the inherent dignity, of the person with HIV.

5.6In order to overcome stigma, discrimination and false stereotypes, awareness-raising, training and information actions should be promoted, especially in schools, involving organised civil society, such as local associations and communities, youth and student organisations.

6.Pre-exposure prophylaxis (PrEP) for prevention of HIV infection

6.1Pre-exposure prophylaxis (PrEP) is a biomedical approach to HIV prevention that involves people at high risk of acquiring HIV taking oral antiretroviral drugs. The efficacy of PrEP is well-documented, when taken as prescribed. It is an essential element in the "combination prevention" necessary to reach the Sustainable Development Goal of ending the AIDS epidemic by 2030 and its use is recommended by national and international guidelines. According to the ECDC opinion, EU countries should consider integrating PrEP into their existing HIV prevention programmes for key populations and those most at risk of HIV infection.

6.2Several studies have described a slow uptake of PrEP in clinical settings and a suboptimal retention in care. Ensuring persistence with PrEP was associated with the biggest impact on HIV incidence, yet many users discontinue PrEP within the first year after initiation, and it was found that less than half were retained. The reasons for stopping PrEP are diverse: change in sexual behaviours during certain periods of life, adverse drug effects, but also low risk perception, fears of insufficient protection by PrEP, experiencing stigma, disruptions in daily routine and substance use, cost and lack of insurance coverage and financial support and frequent visits to the doctor.

6.3The availability of PrEP in Europe is fragmented, complex and in flux. The geographical breakdown of PrEP provision shows substantial diversity across Europe and Central Asia. Identification and removal of barriers to PrEP for greater access to drugs and progress in implementing PrEP are required to reach a wider population in order accelerate progress toward ending the AIDS epidemic by 2030.

6.4Preventive interventions such as pre- and post-exposure prophylaxis and TasP may have a significant impact on controlling HIV and other sexually transmitted infections.

7.Key populations

7.1Despite excellent results in reducing HIV infection in various parts of the world (with a significant reduction in deaths from AIDS) in recent decades, the comprehensive range of combined HIV prevention measures is far from being "universally" available. And where there is no AIDS treatment, HIV infections continue to spread disproportionately, and people continue to die.

7.2HIV infection continues to spread in populations that, for various reasons, preventative measures are not able to reach, or that once infected, are not able to benefit from the antiretroviral treatment currently available. These populations, which are more vulnerable to HIV such as drug addicts, sex workers, gay men and men who have sex with other men (MSM), prisoners, transgender people, migrants, and their respective partners, are referred to as "key populations" and are characterised by higher morbidity and mortality rates than the general population, lower access to health services, and also play a key role in the spread of the epidemic. Yet, combined HIV prevention services have only managed to reach less than half of the people in these groups, which proves that these populations are still marginalised and left behind when it comes to the latest progress in the fight against AIDS.

7.3The vulnerability of these subgroups of the population can depend both on specific practices among these groups, and on the difficulty in accessing HIV services due to poverty and conditions brought on by marginalisation and isolation suffered in different social contexts for various reasons, such as cultural, religious, and even legal reasons.

7.4In order to more easily reach every key population, including those living in peripheral areas, the use of street units should be disseminated and strengthened, including to provide basic services such as rapid tests. Mobile services will also be able to act as a first contact for more effective and sustained care of the individual in more appropriate territorial locations for people living in peripheral or hard-to-reach areas.

7.5In some situations, women are at a further disadvantage than men, are more economically disadvantaged, are not always able to negotiate sex, and are frequently victims of violence 3 . In other situations, the discrimination associated with certain practices, as well as prejudice, intolerance or even punitive laws criminalising homosexuality prevent free access to services. We very often also see an overlap in various different factors that amplify vulnerability.

7.6People with HIV must have equal opportunities for access and professional growth in the world of work. They should also be able to benefit from specific arrangements such as flexible working hours or extended leave for medical visits with guaranteed confidentiality. In some countries, there are bans barring HIV-infected people from certain jobs such as police, customs services and detention facilities 4 . People affected by HIV still encounter difficulties and higher rates when applying for insurance, mortgages and loans, even if in some Member States measures have been taken that facilitate access and limit rate increases for people with severe health conditions. The EESC calls for conditions that reflect the improvement in treatment, health and life expectancy. The anonymised statistical evidence available through the EU Health Data Space should therefore be used to improve access to such financial services.

7.7The COVID-19 epidemiological emergency has had a profound impact on health systems around the world, further exacerbating existing inequalities and making it harder to reach the WHO targets, especially in countries with limited resources. Similarly, disruptions to prevention measures are believed to have led to an inevitable increase in HIV cases; enough to have cancelled out all progress achieved through efforts made in previous years.

7.8In Europe, the key populations most affected by HIV are drug addicts, MSM and migrants. Prevalence varies geographically, depending on the countries concerned. For the HIV epidemic to be effectively addressed, targeted information and institutionally implemented prevention programmes need to reach these population groups, so that specific services can make contact with them proactively, possibly through non-governmental, community-based associations.

7.9Healthcare is an inalienable right of every individual 5 . Therefore access to medical care and to a minimum common standard of quality services for the wellbeing of people affected by HIV must be free and guaranteed for all people living with HIV without discrimination and limitations, following the recommendations of the International Classification of Diseases, as is the case for any other disease. Compliance with the principles of equality and effectiveness must be carefully monitored and controlled.

8.Drug addicts

8.1Intravenous drug dependence has always been associated with HIV transmission, due to the exchange of infected material used for drug use. However, non-intravenous drug use can also be associated with unsafe sexual practices, and thus with a potential risk of contracting and transmitting HIV, as well as other sexually transmitted infections. In particular, the use of stimulants such as cocaine, crack and methamphetamine is often associated with high-risk sexual practices. Sexual transmission of HIV among drug addicts should therefore not be underestimated.

8.2More than 80% of HIV infections in eastern Europe in 2018 involved drug addicts, mostly very young, and mostly women. Young women are more affected than men, including due to prostitution, which is closely linked with drug use. Localised HIV epidemics have also been documented among marginalised populations of injecting-drug users in western Europe.

8.3Prisoners have higher rates of drug use and more harmful consumption patterns than the general population, including parenteral consumption, making incarcerated drug addicts particularly vulnerable.

8.4Drug addicts have low rates of access to testing, and are more likely to receive late diagnoses. Even in Italy, drug addicts tested for HIV made up a low percentage of all local addiction-service users, with a low propensity to offer testing in the absence of HIV-related symptoms.

8.5Access to treatment for drug users is undeniably very low, although it varies from country to country. Overall, it is estimated that only 8% of drug addicts are in antiretroviral treatment, and that of all people in treatment, only 20% are drug addicts. In comparison to those with HIV in the general population, drug addicts are also less likely to achieve virological suppression. This is due to the fact that drug addicts have a lower rate of adhering to treatment and often stop treatment altogether. This leads to a higher risk of death from AIDS among the HIV-positive population of drug addicts.

8.6Programmes aimed at reaching drug addicts more effectively are necessary if we are to aspire to reaching the goal of ensuring universal access to HIV treatment, both within Europe and beyond.

9.Men who have sex with men, MSM

9.1Overall, MSM, or men who have sex with men, are 27 times more at risk of contracting HIV than the general population 6 . Some biological factors make it easier to contract HIV. Most MSM contract HIV through unprotected anal sex, which poses the most high-risk way of contracting HIV compared to other sexual practices. In this population group, high numbers of sexual partners and the widespread use of recreational substances, including intravenous drugs (which often involves sex, called "chemsex") can also contribute to the high prevalence of HIV in MSM.

9.2The increasing availability of antiretroviral treatment, which has led to a significant decline in the spread of HIV overall, has not had the same effect among MSM. On the contrary, there has been an increase in HIV prevalence in this population in many western countries over recent years 7  and there has also been a gradual increase in the proportion of cases attributable to MSM transmission.

9.3Condoms help to prevent HIV transmission and other sexually transmitted infections as well; however the use of condoms is not that widespread due to cultural, educational and supply barriers that reflect different social contexts and health services.

9.4There are various barriers to accessing prevention tools in many countries and in many individual circumstances due to stigma, homophobia and discrimination, which make it difficult to access health services and proper information. There are many cases whereby punitive laws criminalise those who have sex with people of the same sex, forcing them to go underground and to hide their sexual orientation or, worse yet, their identity. Even where laws are not openly discriminatory, stigma and fear discourage people from accessing HIV services, leaving them unaware of the tools available for preventing HIV infection.

9.5Stigma also has an impact on access to testing and diagnosis. Many MSM report fearing judgement from healthcare professionals and hold off on testing, often resulting in late diagnoses. Being unaware of their infection status means they do not have access to antiretroviral drugs which, in addition to having effects on the health of those concerned, would reduce the risk of transmission to sexual partners.

9.6Many men report they would prefer to be tested outside traditional healthcare facilities. Community-supported testing programmes (non-governmental associations) could be a great way, in various situations, of promoting prevention and providing access to testing for those most at risk, where infection rates are higher.

9.7To ensure that the 90-90-90 target can also be reached among the MSM population, cooperation between communities and institutions is essential.

10.Migrants

10.1It is estimated that there are around 231 million migrants worldwide. Migration puts people in situations of extreme vulnerability to HIV infection due to socio-economic and political factors, and, in some countries, it has even been identified as the highest risk factor for HIV. Migrants face obstacles on a daily basis that make access to health and social services difficult. Social exclusion in particular makes migrants extremely vulnerable to HIV.

10.2More than one third of new HIV diagnoses in the EU concern migrants 8 . Although this number is decreasing, half of migrants diagnosed with HIV come from high endemic countries (sub-Saharan Africa, for example), which point to infection originating in their continent of origin. There is still growing evidence that a considerable proportion of infections are contracted after migration, in the host country 9 . Additionally, the possibility of infection during temporary return visits to the country of origin should not be underestimated.

10.3Women account for a significant proportion of foreigners with HIV. While the proportion of women with new HIV diagnoses among EU citizens sits at 16%, this number jumps to 40% among foreigners – mainly African women.

10.4A report by the European Centre for Disease Prevention and Control (ECDC) published in 2017 (focused entirely on the issue of migrants with HIV) showed that foreigners in Europe have difficulty accessing HIV preventative services and HIV testing. Stigma and discrimination, especially towards people from countries with high infection prevalence (including stigma and discrimination from healthcare professionals) are reported as the main barriers. As a result, foreigners with HIV receive their diagnoses later than European citizens, when symptoms of immunodeficiency are already present. Once diagnosed, foreigners, especially those who do not have legal resident permits, also have problems accessing treatment. Fifteen countries do not provide them with the right antiretroviral treatment, again failing to meet the commitments made in 2004 in the Dublin Convention to combat discrimination and rights violations of the weakest and most vulnerable populations, who have always been less protected.

Brussels, 31 May 2023

Cinzia DEL RIO
The president of the Section for Employment, Social Affairs and Citizenship

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(1)    European Centre for Disease Prevention and Control, Operational considerations for the provision of the HIV continuum of care for refugees from Ukraine in the EU/EEA, 5 July 2022, Stockholm: ECDC; 2022.

(2)    In 2016, world leaders signed the United Nations Political Declaration on Ending AIDS, which recognised the essential role played by communities in advocacy, participation in the coordination of AIDS responses and service delivery. Moreover, they recognised that community responses to HIV must be scaled up and committed to at least 30% of services being community-led by 2030.

(3)    Although the EU signed the Istanbul Convention in 2017, it still lacks ratification by some Member States).

(4)    Regulations often dating back to the early years of the HIV epidemic, when less was known about transmission and no treatment.

(5)    As expressed by Article 25 of the Universal Declaration of Human Rights and by Article 35 of the Charter of Fundamental Rights of the European Union.

(6)    While the risk of contracting HIV is higher for MSM worldwide, infection rates vary between geographical areas: MSM represent 50% of all newly reported HIV cases in North America and Western Europe, 47% of those reported in Latin America, around 20% of those reported in eastern Europe, Asia, the Middle East and North Africa, and 12% of those reported in Africa.

(7)    In western Europe, the number of HIV-positive people among the MSM population increased by almost 20% between 2010 and 2014. Among men in Italy, most new HIV diagnoses are made among the MSM population.

(8)    The proportion of migrants among newly diagnosed HIV cases varies from country to country, ranging from 70% in Luxembourg and Sweden, to 5% in some eastern countries such as Poland, Lithuania and Romania. In more than 10 countries, they make up more than 50%.

(9)    Post-migration HIV infection estimates range from a minimum of 2% among sub-Saharan African migrants to Switzerland, to 62% among black MSM from the Caribbean migrating to the UK.