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The Burden of Living With HIV is Mostly Overestimated by HIV-Negative and Never-Tested Men Who Have Sex With Men


To assess whether HIV-negative men who have sex with men (MSM) have realistic views of the current implications of living with HIV, we compared data of 950 tested HIV-negative and 122 never-tested MSM on anticipated consequences of an HIV-infection to the actual experiences of 438 MSM living with HIV. Data were collected with a self-reported, web-based survey conducted between May–June 2019 in the Netherlands. Results indicated that, compared to HIV-positive MSM, HIV-negative MSM significantly overestimated 95% (37/39) of items assessing HIV-related burden. Never-tested participants overestimated 85% (33/39) of items. Overestimation in never-tested MSM was modified with increasing age and having HIV-positive friends/relatives. The high level of overestimation suggests the ongoing need to correct for misperceptions, as this could help reduce stigma towards those living with HIV and diminish fear of an HIV-diagnosis. The latter might be important to improve testing uptake in older never-tested MSM with outdated views on HIV.

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We thank all our participants for filling out the online survey. We further like to thank the following persons for their invaluable support to this study: Wim Zuilhof, Arjan van Bijnen, Tomas Derckx, Renee Finkenflügel, Ertan Ersan, Dominique Loomans, and Fred Verdult. Furthermore, we thank all of those who contributed to the H-TEAM (see Supplement 5).


This study was funded by the HIV Transmission Elimination Amsterdam Initiative (H-TEAM).

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Author notes

  1. On behalf of HIV Transmission Elimination Amsterdam Initiative (H-TEAM)

    • Udi Davidovich



HZ, WvB and UD contributed to study concept and design. HZ and WvB performed all data analyses. AB and UD supervised the data analysis. HZ and WvB wrote the first draft of the report. All authors contributed to interpretation of the data and critically revised the manuscript and approved the final version for publication.

Corresponding author

Correspondence to Hanne M. L. Zimmermann.

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Conflict of interest

A.B. reports grants from ANRS and grants from Sidaction, outside the submitted work. UD reports obtaining unrestricted research grants and speaker’s fees from Gilead Sciences, paid to his institute (Public Health Service of Amsterdam). All other authors declare no competing interests.

Ethics Approval

The study was reviewed by the ethics board of the Academic Medical Centre, Amsterdam, the Netherlands and we received an exemption from further extended protocol review. Questionnaire participation was voluntary and anonymous.

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Zimmermann, H.M.L., van Bilsen, W.P.H., Boyd, A. et al. The Burden of Living With HIV is Mostly Overestimated by HIV-Negative and Never-Tested Men Who Have Sex With Men. AIDS Behav (2021).

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  • HIV
  • Burden
  • Men who have sex with men
  • Male
  • Social stigma
  • Quality of life