Preliminary results from a survey of stigma and discrimination conducted by the European Centre for Disease Prevention and Control (ECDC) show that people living with HIV in Europe are as likely to have experienced stigma in recent years as they were a decade ago. This is particularly the case with some types of stigma experienced in healthcare settings, where the fear of stigma, and to some extent the reality, are if anything stronger than ever. These early results were announced at the fifth Standard of Care for HIV and Co-infections in Europe meeting organised by the European AIDS Clinical Society (EACS) in Brussels last week.
The survey was devised in collaboration with three community organisations: the European AIDS Treatment Group (EATG), AIDS Action Europe, and the UK's National AIDS Trust.
It also uncovered a strong link between state of health and the experience of stigma and discrimination. People who rated their health as ‘bad’ or ‘very bad’ were more than twice as likely as those with good health to have been threatened or verbally or physically abused by family or friends, or to have been excluded from family activities.
A smaller survey conducted recently in Ireland, largely answered by healthcare workers who were not HIV specialists, found that although 83% claimed knowledge of 'Undetectable = Untransmittable' (U=U) and treatment as prevention, 40% said they would still be nervous about drawing blood from a person with HIV. Many took unnecessary precautions such as wearing gloves or even two pairs of gloves at all times when treating people with HIV.
European survey of people living with HIV
Teymur Noori of ECDC said their survey was conducted in response to the United Nations' Sustainable Development Goals which were issued back in 2014. These aim to “End the AIDS epidemic by 2030”, which in practice means reducing adult transmissions of HIV and AIDS-related deaths by 90% by that date. But they also contain a pledge to achieve “zero discrimination” by then.
“We know how to end infections and deaths,” said Noori. “We could do this by scaling up PrEP and opiate agonist treatment, by testing to reach the one in five people in Europe with HIV who don’t know their status, and providing treatment to the one in three who don’t have it.
“But when it comes to stigma, there are major gaps even in our understanding of how it works in HIV. We can’t combat stigma and discrimination till we get a better idea of how prevalent they are and how they operate.”
This was why ECDC undertook the survey; it is hoped that it could be a model for regular surveys to chart progress and indicate the best ways of tackling stigma.
The survey was advertised online and through the websites and networks of the community partner organisations. Between November 2021 and January 2022, it received responses from 3272 people with HIV from 54 countries. Ninety per cent were on antiretroviral therapy (ART).
Eighty per cent of respondents were men, 16% were were women, and of these, 17% were trans women (2.6% of all respondents), while 0.5% of the men were trans. Three per cent defined as non-binary or identified in some other way, while 1.5% did not respond to the gender and sexuality questions. Sixty-eight per cent of all respondents defined as lesbian, gay or bisexual.
Asked "How satisfied are you with your life, on a scale of one [totally unsatisfied] to ten [totally satisfied]?", 17% rated their life satisfaction at three points or less, 31% at four to six points, and 56% at seven to ten (though only 20% gave it nine or ten).
Asked firstly whether they were ashamed of their HIV status, and secondly if they had low self-esteem because of it, 27-28% agreed or strongly agreed with both questions, and 45-49% disagreed or strongly disagreed with them.
However, when asked if it was difficult to tell other people about their HIV status, the proportions were reversed, with 57% agreeing that this was difficult or very difficult and 24% saying no, it wasn’t.
The isolation of having HIV was underlined by 17% of respondents saying they had not told even one friend about their HIV status. Nineteen per cent had told no sexual partners (current or previous), 26% no family member, and 34% no co-workers.
An additional 23% had only told one or two family members, and 30% one or two sexual partners.
However, 29% had told most or all their friends, 24% most or all of their family, and 22% most or all of their sexual partners.
The respondents were then asked about whether they had experienced six kinds of negative reactions to their status: rejection by friends (24% said yes, they had); threats, or verbal or physical abuse, from a sexual partner (17%); discriminatory remarks or gossip by their family (16%); being blackmailed by people they knew (15%); threats or abuse from their family (11%); and being excluded from family activities (10%).
Respondents were also asked when they had last had these experiences. One of the most revealing findings was that respondents were as likely to say they had last experienced them in the last year as more than ten years ago. To give an example: 24% of respondents said they had had the experience of being rejected by friends. For a quarter of these, it last happened more than ten years ago. But for another quarter it happened in the last year.
While some people who have been aware of their status for over ten years may have got better over time at dealing with stigma, or are encountering it less, it suggests that it is an ongoing problem for many others.
It is no surprise that people experiencing stigma and discrimination are more likely to express dissatisfaction with their lives, but there was an even stronger association with physical health. People who rated their health as “poor” or “very poor” were 50-70% more likely than those with “fair” health to report rejection by friends, negative gossip by family, or threats or abuse from a partner, and twice as likely to report threats or abuse from family or friends, or exclusion from family activities. They were 3-4 times more likely to experience these than people rating their health as good or very good.
"17% of respondents had not told even one friend about their HIV status."
Although the numbers were small, the survey found that some key population groups were more likely to report certain kinds of stigma than others: sex workers and migrants were considerably more likely than average to report being threatened or abused by sexual partners, sex workers twice as likely to report being blackmailed, and prisoners and people who inject drugs more likely to report rejection and negative gossip by their families.
The survey also asked about experiences of stigma in the healthcare setting. It found that what has been called anticipated stigma in health care was as powerful in people with HIV as it always had been. For instance, 56% had worried they might be treated differently by healthcare staff because of their status, 45% were afraid to go to services, and 36% had actively avoided them. In each case, 44-46% of those reporting anticipated stigma had felt it in the last year.
Experiences of overt discrimination were less common but a third had experienced healthcare staff being discriminatory to others with HIV (11% in the last year), 29% had heard staff making discriminatory remarks or gossiping (9% in the last year) and 23% had experienced reduced or delayed services due to their HIV (7% in the last year). Fifteen per cent had been tested for HIV without their consent, though this seemed to be less common now (3% in the last year).
ECDC will follow up this survey with one among healthcare workers, concentrating on training or lack of it, fears of HIV infection and avoidance of people with HIV, attitudes towards people with HIV and to key populations, and the policy and guidelines environments in which healthcare workers operate.
Irish healthcare workers
A survey conducted this summer in Ireland gathered 298 responses from a variety of healthcare workers, most of them not HIV specialists (71% said they had had no experience in HIV care).
Dr Elena Vaughan from the University of Galway told the meeting that the survey used a standard set of questions that has been used to gauge healthcare worker attitudes in a variety of settings worldwide. The questionnaire was distributed widely among professional associations, medical departments and social media, and there were three pieces in the Irish media about it.
Among the respondents, 32% were nurses, 23% doctors and 44% were other practitioners such as dietitians and dental hygienists, and also receptionists and administrators.
Eighty per cent said they had received no specific training in HIV stigma and discrimination. Twenty per cent were aware of written workplace guidelines about treating people with HIV, but just as many said they were unaware they could get into trouble if accused of discriminating against people with HIV.
Seventeen per cent said they had never heard of U=U but although this implies that 83% had, 40% still said they would be uncomfortable about taking blood from a person with HIV and 29% dressing a wound.
Thirty-one per cent said they would always wear gloves when treating a person with HIV and 13% double gloves. Twenty-one per cent said they would take other precautions not required by guidelines: a nurse said they would “wear eye protection when drawing blood”, a dental hygienist would “always schedule appointments at the end of the day” and a dietitian would “avoid securing a nasal tube if possible”.
Dr Vaughan said that this was a preliminary survey made on limited budget and time and that although they had made a special effort to engage primary care physicians, few GPs had answered.
Members of an audience panel questioned whether such surveys might receive better response rates if targeted at particular specialities or settings, maybe in collaboration with other learned societies, but Elena Vaughan and Teymur Noori thought it was better to reach out to as wide a variety of healthcare workers as possible, as the patient experience involved encountering all of them. It might be better to deal with resource constraints by doing surveys in regions of four or five countries at a time, on a rotating basis.
Panel Chair Professor Fiona Burns of London’s Royal Free Hospital commented that she had experienced HIV specialists making very valuable interventions when encountering stigma against their patients from other healthcare staff, but this needed to be systematised, with a programme of training informed by the findings of surveys like these.
Noori T. Measuring HIV-related stigma in the community and in healthcare settings: Preliminary results and future plans. EACS Standard of Care for HIV and Co-infections in Europe meeting, Brussels, 13-14 October 2022.
Vaughan E. Measuring HIV-related stigma in healthcare settings: Lessons from Ireland. EACS Standard of Care for HIV and Co-infections in Europe meeting, Brussels, 13-14 October 2022.