Study shows number of people who have been tested for HIV without their knowledge has increased

Four in 10 people living with HIV have already experienced some form of social discrimination, a national study shows, which points to an increase in the number of people being tested without their knowledge.

The People Living with HIV Stigma Index (Stigma Index), launched this Wednesday in Lisbon, is an international project that was first applied in Portugal in 2013 and replicated in 2021/2022. Portuguese Association for the Prevention and Control of AIDS – Ser+ and the Group of Treatment Activists – GAT) with financial support from the Directorate General of Health and in partnership with the National School of Public Health.

The study, which involved 1,095 people living with HIV from the regions of Lisbon, Porto, Coimbra and Faro, highlights aspects that appear to have worsened since 2013, namely the confidentiality of medical records and dealing with situations of discrimination.

In terms of deciding to take the test, there has been a “slight increase” in the proportion of respondents who say they do so voluntarily, from 51.3% in 2013 to 53.9% in 2021.

But the increase is “even more substantial” among those who report they have been vetted without their knowledge, rising from 21.9% to 29.7%.

GAT Executive Director Ricardo Fernandez told Lusa that, with regard to conducting the test without the subject’s knowledge, the investigation has not established the context in which these tests were conducted, but considered that they arise in situations such as pre-screening. surgical examinations, as well as during scheduled examinations prescribed by family doctors.

Ricardo Fernandez considered this situation “extremely serious”, given that the doctor must justify the appointment of this screening.

A third of respondents had delayed or avoided treatment for reasons related to stigma and discrimination, and 22% reported experiencing some form of discrimination by healthcare professionals in the last 12 months, with the most frequent occurrence in non-HIV health services (16% ). .

“When only comparable data is analyzed between 2013 and 2021, it turns out that over the past 12 months the number of people faced with such situations has decreased (from 11% to 7%),” notes the study, which marks Zero Discrimination Day.

Non-compliance with confidentiality increased from 5.3% to 9.5%, with respondents reporting that their medical records are not confidential, according to a study that involved 10 hospital centers and 18 community organizations.

Last year, 8.5% of respondents said they had experienced some form of social discrimination, with discriminatory comments and verbal abuse most frequently reported, up from 29% in 2013, and 3.5% said they had already suffered in some cases. a kind of discrimination against the situation of violation of their rights.

The vast majority (90.5%) identified internal stigma and 30% self-discriminatory behavior in the last twelve months, values ​​that have decreased since 2013, with these issues being more pronounced among immigrants, sex workers, transgender people and women .

Analyzing “stigma and discrimination for non-HIV reasons”, the study shows that transgender people, drug users and men who have sex with men report discrimination the most: 88%, 77% and 65% respectively. .

“While the results of this study seem to point to a favorable evolution in terms of the stigma and discrimination faced by people living with HIV in various contexts of their lives, it seems that this issue remains very relevant in Portugal, especially in the field of health . services that disproportionately reach people belonging to one or more vulnerable groups, as well as women,” the study emphasizes.

It also points out that the data currently collected may be skewed by the covid-19 pandemic, which caused a decrease in social interactions in the 12 months prior to the application of the questionnaire, which could lead to an artificial decrease in cases of discrimination. .

The report presents a number of recommendations for parliament, government and non-governmental organizations that work in this area at the legislative level, as well as intervention strategies such as “monitoring, accompanying and acting in situations of stigma and discrimination in the context of HIV infection”. or “ensure the right to sexual and reproductive health without discrimination”.