Experts Say HIV Stigma Prevents Learning Lessons for the COVID-19 Pandemic

Although there are many lessons to learn from the HIV pandemic, expert say that ongoing stigma around the disease is preventing the implementation of lessons for the COVID-19 pandemic, according to a letter published in Science.

Because the HIV pandemic largely affected members of the LGBTQIA+ community who were already stigmatized, public health lessons were not adopted by broader parts of society, according to the authors. In the article, the authors argued that society could learn a lot from the experiences of stigmatized communities.

“The consequence of stigmatization is to discredit the knowledge that certain people have acquired and the experiences they have gained,” said Oliver Razum, MD, MSc, head of the Department of Epidemiology and International Public Health at Bielefeld University, in the press release. “This was the case during the HIV pandemic. Because people from the LGBTQI+ community were stigmatized, their experiences with AIDS and the pandemic were devalued.”

For example, the authors said HIV-affected communities have learned how to increase acceptance of barrier methods, such as condoms. However, these lessons were never accepted by broader society and had to be re-learned again during the COVID-19 pandemic as experts convinced individuals to wear masks.

Furthermore, the authors said stigmatization threatens societal cohesion during times of national upheaval, such as during a pandemic. Because stigma keeps social groups small or excluded, it helps marginalize these individuals and perpetuate inequalities.

The experts who wrote the letter are working on a project called “Health Care for Marginalized Groups as an Indicator of Societal Cohesion,” which is a sub-project of the Research Institute for Social Cohesion (RISC). According to the press release, RISC is an association of 11 universities and research institutes. In their sub-project, investigators are researching how different marginalized groups experience access to health care and how this strengthens or jeopardizes societal cohesion.

To learn from the experiences of the LGBTQIA+ community during the HIV pandemic, the authors proposed various research methods, including, for example, digital archives in which text or film material are collected with the interviews of those affected. In research on participatory action, members of the affected community are involved in studies as researchers themselves by developing their own research questions and conducting surveys.

Notably, the researchers said their work is not about demanding that marginalized groups learn more from their experiences.

“Instead, it’s the non-marginalized groups that need to learn the lessons from the experiences of those affected,” said co-author Yudit Namer, PhD, of Bielefeld University, in the press release. “Moreover, this can only be a first step, and must go hand in hand with combating marginalization and stigmatization.”

REFERENCE

Stigmatization prevents lessons from the HIV pandemic. News release. EurekAlert; September 29, 2021. Accessed October 8, 2021. https://www.eurekalert.org/news-releases/929979