Discrimination in the healthcare sector is curable

The monitoring of discrimination based on HIV status carried out by the Swiss AIDS Federation shows that people living with HIV are still exposed to stigmatisation and discrimination on a daily basis. Half of the incidents reported occurred in the healthcare sector. Certainly, this data only represents a small part of the existing situations. Nevertheless, the results are consistent with other relevant sources. For example, in a 2017 European survey of people living with HIV, almost a third of them stated that they had experienced discrimination due to their HIV in the past three years. In the study by Christiana Nöstlinger and her research team, people stated that more than half of the incidents occurred in the healthcare sector. Of people living in Switzerland, almost a quarter had been exposed to discrimination in the healthcare sector. The 2022 ECDC stigma survey of people living with HIV shows that such situations have an impact on the utilisation of medical care: People are afraid that they will be treated differently or even badly by medical staff or that they will be denied care. They are also afraid that their status will be revealed when they consult a health service.

UNAIDS (Joint United Nations Programme on HIV/AIDS) defines stigma and discrimination based on HIV status as a process of devaluing people living with HIV or people associated with the virus. Discrimination follows stigmatisation and is characterised by unequal, unfair treatment of people based on their actual or perceived HIV status.

Etymologically and historically, the term "stigma" refers to a label that was attached to certain people in order to recognise them and assign them to a lower social class. The American sociologist Erving Goffman theorised the phenomenon from 1963 onwards and distinguished visible stigmas from invisible, stigmatised people and stigmatisable people. In contrast to skin colour or body weight, HIV status is invisible. The person concerned is therefore faced with the dilemma of disclosure ("outing"). Not coming out makes it possible to avoid stigmatisation, but also forces secrecy and leads to the constant fear of being discovered. Coming out means taking the risk of being stigmatised by those you have confided in, but also by everyone to whom the information has been disclosed.

Stigmatisation and discrimination in connection with HIV status are often intersectional. As this virus is most commonly transmitted through sexual intercourse or sharing injecting equipment, people living with HIV face underlying assumptions, questions and moral judgements around sexuality and substance use. As the epidemic particularly affects certain population groups, stigmatisation and discrimination related to HIV status overlap with others. For example, women, transgender people, men who have sex with men and/or people with dark skin who use substances and are living with HIV are particularly exposed to stigma due to their serological status.

Stigmatisation and discrimination related to HIV status have a direct impact on people living with HIV. Feelings of guilt and shame, fear or even violence directed at them or which they witness have an impact on the body and soul of people living with HIV. This affects their self-image and self-esteem, gives them the feeling that they have lost control over their lives and ultimately worsens their mental, physical and social health. The direct effects can also be extremely damaging in terms of health. Fear of stigmatisation and discrimination can lead people living with HIV to forgo healthcare or not disclose their serological status. As a result, people living with HIV are unable to access the healthcare they need and healthcare professionals are unable to provide them with appropriate quality services.

Research has identified the causes and mechanisms of stigmatisation and discrimination based on HIV status. This has made it possible to define measures to prevent this phenomenon in the future so that people living with HIV can live well and take care of their health.

Risk management

HIV status should only be enquired about if this is relevant. If this is not relevant, there is no obligation to disclose one's HIV status. In addition, information that allows conclusions to be drawn about HIV status should be protected and only be accessible to people who need it. Information on HIV status should never be listed in administrative data or displayed in areas accessible to third parties.

displayed in areas that are accessible to third parties (sickroom, staff break room, etc.). In case of doubt, it may be requested that this information is not stored. It can also be requested to be deleted.

People living with HIV should be able to be received in the same facilities and time slots as people without HIV.

Fear management

Being informed about the transmission of HIV makes it possible to address the lack of knowledge that underlies stigmatisation and discrimination and leads to unfounded fears. Protective measures should be the same regardless of HIV status, and everyone should have access to the medical care they need. Denial of medical care is not acceptable.

If there is a fear of being discriminated against in a health service, it is possible to turn to a service specialising in HIV or a community service for highly vulnerable populations, such as checkpoints for gay men, bi men and other men who have sex with men. Studies show that these services are mostly appropriate for people living with HIV. Even if they do not provide a service themselves, they can refer to a friendly provider in the region.

Moral management

Everyone should challenge their beliefs about HIV and people living with HIV, just as we should do in relation to any aspect that may lead to discrimination (gender, sexual orientation, ethnic or cultural affiliation, social class, physical and intellectual ability, etc.). If we do not do this, our prejudices will distort our relationship with others and lead us to act in a stigmatising and discriminatory way, often without realising it.

In health, as in other areas, it is only by working on ourselves that we can recognise the empowerment of people living with HIV to care for themselves and accept the choices they make to do so.

Impact management

Being aware of stigma and discrimination based on HIV status makes it possible to recognise, prevent or put an end to them. People living with HIV and the organisations that support them are important partners in this area.

If you experience stigmatisation or discrimination, it is important to talk about it. Reporting it makes it possible to make it visible. It can be reported to the Swiss AIDS Federation, directly to the legal service or via a member organisation. The national organisation collects the data in order to report to the federal authorities. If possible, it is worth doing this directly to the person who committed the offence and/or to the institution where the incident took place. It is also possible to talk about it with other people living with HIV and/or with professionals. This can help us to overcome the negative feelings that such situations can trigger in us and to find out how we can react individually and together.