Nearly a third of HIV-positive people in London report discrimination, often from healthcare staff

Almost a third of HIV-positive individuals surveyed in London have experienced HIV-related discrimination, according to a study to be published in the December edition of AIDS and Behaviour (currently in press). Half of the individuals who reported discrimination said that it had involved healthcare staff.

HIV-related discrimination (or the fear of such discrimination) can have far-reaching consequences, including a failure to test for HIV or access HIV care. Some research even suggests that discrimination may contribute to HIV risk behaviour.

Tackling HIV-related discrimination was a key aim of the UK’s national HIV strategy, which was published in 2001. And in 2006 the UK government has published a draft action plan on address the stigma and discrimination attached to HIV. As part of this plan, NAM, the publisher of aidsmap.com, was commissioned by the Department of Health to write a booklet on HIV, stigma and discrimination.

But there is very little UK research on the number of HIV-positive individuals who have experienced HIV-related discrimination. Investigators from London’s City University and the Centre for the Study of Sexual Health and HIV at Homerton University Hospital therefore designed a study to determine the extent to which people with HIV living in London have been discriminated against because of their HIV infection and by whom. The study was also designed to see if there were any factors associated with reporting such discrimination.

The study ran between June 2004 and June 2005 and patients attending NHS HIV outpatient clinics in north east London aged 18 or over were eligible for recruitment.

Individuals were asked if they had ever been discriminated against because they had HIV. If they answered ‘yes’ they were asked to say by whom. There was also an opportunity for individuals to describe their experience of discrimination.

To establish the factors associated with discrimination, study participants were asked to provide details of their age, sex, ethnicity, sexual orientation, immigration status, country of birth, and relationship status. They were also asked to say how many years they had been living with diagnosed HIV infection, if they were taking antiretroviral therapy, if they had experienced any treatment side-effects, or if they thought their body shape had changed as a consequence of taking anti-HIV drugs.

Because the investigators wanted to see if discrimination was related to risky sexual behaviour, the study participants were asked to say if they had had anal or vaginal sex in the previous three months and with whom.

A total of 2,680 patients were eligible for inclusion in the study and 1687 completed and returned questionnaires.

Results

Gay men (758 individuals), black African heterosexual women (480 patients), and black African men (224 individuals) comprised 87% of the study sample and were included in the investigators’ analysis. Although questionnaires were returned by white heterosexual men and women and patients of other black and Asian ethnicities their numbers were too small for statistical analysis.

The investigators found that 30% (414) of their study sample reported discrimination because of their HIV status. In initial ‘univariate’ analysis, gay men were statistically more likely to report discrimination than black African women or men (34% vs. 28% vs. 21%, p < 0.001).

Subsequent ‘multivariate analysis’ showed that reporting HIV-related discrimination was significantly associated in all three groups with an increasing number of years since HIV diagnosis and the body showing signs of HIV (p < 0.05).

After controlling for number of years since HIV diagnosis and the body showing signs of HIV infection, the investigators found that gay men, black African women and black African men were equally likely to report that they had been discriminated against because of their HIV infection.

Of the 414 people who reported experiencing HIV-related discrimination, 403 answered the question, ‘By whom?’ Just under half (49.6%) said the discrimination had come from healthcare staff, meaning that 14% of the entire study sample had experienced discrimination because of their HIV infection from a healthcare professional.

Additional information about the experience of discrimination was provided by 316 individuals and 54 people specifically mentioned HIV. Discrimination from healthcare staff (for example, “the dentist refused to treat me”), employers (for example, “I lost out on career opportunities when they found out I was HIV-positive”), and from family or friends (for example, “I was rejected from my family because of HIV), were mentioned.

A further 72 people did not specifically mention HIV, but they experienced discrimination from the same sources.

Mental health and discrimination

After controlling for the number of years since HIV diagnosis and HIV-related body shape changes, experiencing HIV-related discrimination was significantly associated with depression and suicidal thoughts amongst gay men (p < 0.05) and was of border-line significance for black African heterosexual women (p = 0.06).

Discrimination and sexual risk

There was no relationship between experiencing discrimination because of HIV and reporting unprotected anal or vaginal sex.

Investigators’ comments

“In a diverse sample of people living with HIV surveyed in London in 2004 or 2005, nearly a third said they had been discriminated against because of their HIV infection. Of those who reported HIV-related discrimination, almost a half said this had involved a health care worker”, comment the investigators.

Because gay men and black African men and women were equally likely to report HIV-related discrimination, the investigators believe that such discrimination is a function of “exposure risk”. They explain, “specifically, the number of years you have lived with HIV or whether the body is showing signs of HIV, rather than ethnicity, gender or sexual orientation.”

Some limitations with the study are acknowledged by the investigators. The research looked at self-report of HIV-related discrimination and therefore was reliant upon individuals’ subjective experience of discrimination and willingness to report such discrimination. The investigators also note that they were unable to tell if respondents were reporting perceived or actual discrimination. Furthermore, small numbers meant that it was not possible to examine the HIV-related discrimination experienced by some patient groups, although the investigators believe “it is likely that they will also experience HIV-related discrimination.”

But the investigators believe the study had significant strengths, not least that its recruitment from NHS HIV treatment centres means that it was representative of the HIV-affected population in the UK. Furthermore, the sample size was large and diverse.

“Our findings highlight the urgent need for the Department of Health implement its action plan for combating HIV-related discrimination in the UK, inside as well as outside the NHS”, conclude the investigators.