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HIV‐negative gay, bisexual men overestimate burden of living with HIV

Only 3% of PLHIVs reported experiencing HIV stigma and discrimination, but 41% of HIV-negative and 43% of never tested participants said they would expect to experience it often. The overestimation could discourage MSM to get tested for HIV, which could worsen the epidemic.

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HIV-negative and never-tested gay and bisexual men overestimate the implications of living with HIV even if – as it is – HIV is already a manageable and treatable chronic health condition with effective and well-tolerated antiretroviral therapy (ART).

This is according to a study conducted by researchers from the HIV Transmission Elimination Amsterdam Initiative, which found that – specifically – many overestimated the psychosocial implications, health-related consequences, burden of disclosure, impact on sex and relationships, and practical consequences of HIV.

Published in the journal AIDS and Behavior, the study – “The Burden of Living With HIV is Mostly Overestimated by HIV-Negative and Never-Tested Men Who Have Sex With Men” – was done by Hanne M. L. Zimmermann, Ward P. H. van Bilsen, Anders Boyd, Amy Matser, Frenk van Harreveld, and Udi Davidovich on behalf of HIV Transmission Elimination Amsterdam Initiative (H-TEAM).

For this study, the researchers conducted 18 in-depth interviews with gay and bisexual men diagnosed with HIV between 2014 and 2018 in the Netherlands. Data from these interviews were then used to identify the implications of living with HIV and to develop a questionnaire with 39 items. This questionnaire was circulated online to: 1) assess the experiences of gay and bisexual men living with HIV, and 2) ascertain the perceptions of living with HIV of HIV-negative and never-tested gay and bisexual men.

In total, 1,510 men completed the survey.

The study found a disconnect in the answers.

  • Most men with HIV said the quality of their lives hasn’t changed after HIV diagnosis, while 14% reported an improvement and 17% reported a deterioration
  • Only 31% of HIV-positive men said their HIV status was very serious, compared to 76% of HIV-negative and 83% of never-tested men who thought that HIV-positive diagnosis automatically means being in a severe situation
  • 79% HIV-positive men were used to taking pills every day, but only 50% of HIV-negative and 42% of never-tested men thought they would get used to it
  • Almost all PLHIVs had an undetectable viral load and 71% trusted in the U=U message, but only 22% and 43% of HIV-negative and never-tested men, respectively, reported being confident with U=U
  • Only 18% of PLHIVs reported often experiencing an emotional burden from HIV, but 51% of HIV-negative men and 56% of never-tested gay and bisexual men think having HIV will burden them emotionally
  • Only 8% of PLHIVs fear infecting family, friends and colleagues, but 23% of HIV-negative and 24% of never-tested participants had the same fear
  • 66% of PLHIVs reported that the burden of disclosure is low or medium, but 55% of HIV-negative and 67% of never-tested participants expected a high burden of disclosure
  • 41% of PLHIVs reported difficulties getting into a steady relationship due to living with HIV, but 51% of HIV-negative and 65% of never-tested participants expected difficulties here
  • Only 3% of PLHIVs reported experiencing HIV stigma and discrimination, but 41% of HIV-negative and 43% of never tested participants said they would expect to experience it often

The researchers noted that the disparity is worrisome, as it could affect the health-seeking behaviors of gay and/or bi men. This is because, when HIV-negative men who have sex with men (MSM) underestimate or are unaware of the implications of HIV as a chronic illness, they may become “less motivated to get tested or engage in prevention.”

“The overestimation of almost all items suggests an ongoing need for knowledge-based campaigns that correct misperceptions on the realities of living with HIV, which may have the potential to decrease stigmatization towards those living with HIV and might additionally reduce fear of negative consequences of an HIV diagnosis,” the researchers stressed.

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