In France, people living with HIV infection are treated with antiretroviral drugs to control the disease, so they should be able to lead normal lives. This is not always the case, however. Drawing on a national representative survey conducted in 2011, Élise Marsicano, Rosemary Dray-Spira, France Lert and Christine Hamelin describe the discrimination to which HIV-infected people are exposed, be it in the workplace, in health care settings or in the family, and distinguish between the various reasons for unfair treatment (linked to their HIV status or other factors).
1 Since the very start of the HIV/AIDS epidemic, the fight against stigma and discrimination has been a key component of policies to combat the disease. Thanks to the introduction of effective new treatments from 1996, AIDS has been transformed into a chronic disease, yet the stigmatizing representations of HIV carriers have not disappeared, and still form an obstacle to prevention and screening, and to the social integration of people living with HIV. [2] As the epidemic is concentrated in specific population groups (homosexual men, male and female intravenous drug users, male and female immigrants [1] from sub-Saharan Africa), people infected with HIV are exposed not only to HIV-related stigma, but also to other forms of discrimination, such as racism or homophobia. The 2011 ANRS-VESPA2 survey (Box 1) conducted on a representative sample of individuals infected with HIV, enables us to measure the frequency of various forms of discrimination against this population. Men who have sex with men represent 40% of the HIV-positive study population, immigrant men and women from sub-Saharan Africa 24% (8% and 16%, respectively), and male and female intravenous drug users 11% (7% and 4%, respectively). The remaining 26% are heterosexuals who are not sub-Saharan African immigrants, with men and women represented in equal numbers. Several approaches can be used to measure discrimination, including the residual method, testing and perceived discrimination, [3] and it is this third subjective measure that we use here. It is based on the method proposed in the national Trajectories and Origins survey (TeO) [2] to limit reporting bias. [4] The VESPA2 questionnaire asks about experience of inequality or injustice in various situations of daily life, and whether it was perceived as discriminatory (HIV status, skin colour, sexual orientation, gender, etc.) (Box 2).
Box 1. VESPA2, a survey of persons living with HIV in metropolitan France
* ANRS: Agence nationale de recherches sur le sida et les hépatites virales (National agency for research on AIDS and viral hepatitis)
VESPA2: VIH - Enquête sur les personnes atteintes - 2e édition (HIV -Survey of affected persons - 2nd edition).
Box 2. Measuring discrimination
Examples of questions:
- “During the last two years… . Has a private practitioner ever refused to take you as a patient? Has a hospital ever refused to treat you? Has a doctor or health care worker ever treated you less well, or been less polite to you than to the other patients?”
- “During the last two years… Have you been treated badly by your family?… Have you been treated badly at a party, a get-together or family event?”
Reported instances of unfair treatment attributed to one or more of the suggested reasons (along with visible reasons such as disability, obesity, etc.) were considered as discrimination.
Note: It was decided to record experience of discrimination during the last two years only (rather than the last five years, as in the TeO survey) because respondents had been knowingly HIV-positive for different periods of time, so their duration of exposure to HIV-related discrimination also varied.
* CMU = Couverture maladie universelle (universal health care coverage) for persons with no social security coverage; AME = Aide médicale de l’État (state medical aid) for undocumented immigrants.
A quarter of HIV-positive people report experience of discrimination
2 People living with HIV frequently experience discrimination. More than a quarter (26%) of respondents reported discriminatory treatment of some kind during the two years preceding the survey. This frequency is high; in the TeO survey, just 20% of respondents reported such experience in the preceding five years. [4]
3 Whatever their characteristics and their group, and contrary to what is observed in the TeO survey, women in the HIV-positive population report more discrimination than men. Almost four in ten female HIV-positive immigrants from sub-Saharan Africa, and the same proportion of intravenous drug users, report discrimination, versus slightly more than one in ten heterosexual HIV-positive men who are not immigrants from sub-Saharan Africa.
Reasons for discrimination: HIV status, skin colour and sexual orientation
4 All the survey respondents were HIV-positive, and this was the main reported reason for discrimination (13% of respondents). The hierarchy described above is found again here, with women and drug users reporting HIV-related discrimination twice as frequently as men who have sex with men, male immigrants from sub-Saharan Africa, and heterosexual men who are not immigrants from sub-Saharan Africa (Figure 1). Persons living with HIV also experience racism and homophobia, with 5% of respondents reporting discrimination linked to skin colour, origin or nationality, or sexual orientation (Figure 2). In contrast, while HIV-positive women report more discrimination than their male counterparts, gender is very rarely cited as a reason (1%). The other reasons are reported by less than 3% of respondents.
Unequally discriminatory social situations
5 Not all HIV-positive persons are concerned by the various social situations, so they are not all equally exposed to discrimination. Some situations concern the entire sample (family, health care) while others do not (job seeking, workplace).
6 Among persons living with HIV, 11% reported discrimination within the family and 8% in health care settings. Among persons in employment at the time of the survey (half of the sample), 6% reported discrimination in the workplace. Respondents frequently reported discrimination in job recruitment, and this is a sphere where the problem is especially prevalent (note that one in three of the HIV-positive respondents had been looking for a job in the two years preceding the survey). The difference between levels of discrimination in the workplace and while job seeking, also observed in the TeO survey, testifies to the higher frequency of exposure to discrimination when looking for employment, or perhaps reflects a greater sensitivity to this type of discrimination; it may also correspond to more explicit forms of unfair treatment in this sphere. [6]
Proportion of HIV-positive persons who reported discrimination for reasons of any kind, or due to their HIV status, by socio-epidemiological group
Proportion of HIV-positive persons who reported discrimination for reasons of any kind, or due to their HIV status, by socio-epidemiological group
Coverage: Entire HIV-positive study population (3,022 individuals).Interpretation: 24% of HIV-positive men who have sex with men reported experience of discrimination in at least one sphere during the previous two years (for any of the cited reasons).
7 The analysis below aims to compare levels of discrimination within each HIV-positive population group, taking account of age, educational level and employment status. The analyses are conducted separately for the family, health care, job-seeking and workplace spheres. The reference category for the multivariate analysis is that of “heterosexual men who are not immigrants from sub-Saharan Africa”, the group least exposed to discrimination linked to gender, skin colour or sexual orientation.
The family sphere
8 One in ten HIV-positive respondents reported experience of discrimination in the family over the previous two years. This is especially the case for HIV-positive women, but also for the minority HIV-positive populations of male homosexuals and drug users.
9 Compared with the reference category of men, HIV-positive men who have sex with men reported more frequent discrimination within the family, reflecting the strength of homophobic sentiment in this sphere. This is also the case for HIV-positive intravenous drug users, due to the social condemnation of drug abuse and its negative impact on family relationships. Non drug-using male heterosexuals, immigrants and non-immigrants alike, are the least exposed to discrimination in this sphere, reflecting their dominant position within the family.
10 Unemployed respondents more frequently reported being discriminated against by their families than those in employment. Having a job provides a certain security which may help to reduce both perceived and actual unfair treatment, [7] since persons in work are doubtless better integrated and respected within the family.
Frequency of discrimination by perceived reasons
Frequency of discrimination by perceived reasons
Coverage: Entire HIV-positive study population (3,022 individuals).Interpretation: 1.2% of HIV-positive respondents report gender-related discrimination over the last two years.
Health care settings
11 Discrimination against HIV-positive women is expressed in a broad range of social settings, but in different ways. Health care settings are the only sphere in which women, whatever their characteristics, report more discrimination than men. This was also observed in the TeO survey, though to a lesser extent. [6] Discrimination against HIV-positive women is perhaps potentially exacerbated by the fact that their HIV status makes them unfit, in other people’s eyes, to perform their social roles as wife and mother. [8]
12 Discrimination in health care settings follows an age gradient: the younger the respondent, the higher the reported frequency of discrimination. This was also observed in the TeO survey. Unemployed HIV-positive respondents reported more discrimination in health care settings than those in employment. Hence, despite the principles of universality and equality governing health care ethics, a difficult situation increases the risk of being treated unfairly, or perhaps of perceiving this to be the case. This observation does not apply solely to HIV-infected people: other studies have shown that social discrimination is stronger than racial discrimination in health care settings. [9]
Job seeking and workplace spheres
13 In the job-seeking sphere, perceived discrimination is high, with little difference between groups. Only immigrant women from sub-Saharan Africa stand out. Reported discrimination is especially high among HIV-positive persons aged over 55, confirming the negative effect of advancing age on labour market prospects.
14 In the workplace, perceived levels of discrimination are lower. It is nonetheless the setting for racism and homophobia, as attested by the situation of HIV-positive men who have sex with men and HIV-positive immigrants from sub-Saharan Africa of both sexes. Gender discrimination also occurs in this sphere, with particularly high levels of discrimination reported by women, except in the case of female drug-users (few of whom are in employment).
15 Last, the workplace is the only sphere where discrimination varies with educational level: HIV-positive persons with a high level of education (upper secondary or higher) are four times more likely to report discriminatory treatment than those with no more than primary education. This finding suggests that highly qualified HIV-positive individuals are more frequently discriminated against in the workplace; it is not simply a question of heightened perceptions, since this would have produced higher reported levels of discrimination in all spheres.
16 While discrimination is frequently reported by HIV-positive people, it is experienced in different ways and to varying extents in the various subgroups of this population. Discrimination against women in health care settings, and against immigrants from sub-Saharan Africa and against male homosexuals on the job market are not specific to people with HIV, but appear to be aggravated by their HIV status. The more frequent reporting of discrimination within the family and in health care settings by unemployed respondents reflects the central role of employment – from which many people with HIV are excluded – in social status and relationships. [5]. While showing that people living with HIV also attribute their experience of discrimination to factors other than their HIV status, these findings shed further light on the persistence of discrimination against this population, even though management of the disease is now greatly improved.
