AIM to ENGAGE: Exploring Awareness, Importance, and Meaning of HIV cure development among affected communities in the Netherlands

Abstract

From the earliest years of the HIV epidemic, people living with the virus have insisted on a voice in shaping the response. The meaningful involvement of people with HIV/AIDS (MIPA) has since become a core ethical principle in research and care, fostering justice, strengthening accountability, and ensuring that scientific priorities reflect lived experience. Upholding MIPA is equally critical for advancing HIV cure science and translating progress into real-world benefit. Against this backdrop, this thesis examines how affected communities in the Netherlands—people living with HIV, their partners, and gay, bisexual, and other men who have sex with men (GBMSM)—engage with HIV cure research, focusing on their awareness, perceptions of importance, and the personal meaning they attach to a potential cure. Drawing on a systematic review, qualitative interviews, and a cross-sectional survey, the findings of this thesis show that Dutch communities are generally aware of HIV cure developments but often lack detailed knowledge, with many expressing a desire to learn more despite limited active engagement. This passivity appears linked to perceived necessity: while a cure was widely regarded as important given the ongoing global epidemic, its personal relevance varied. For many people with HIV, HIV is no longer a death sentence but a manageable chronic condition, reducing the urgency of a cure. Advances in prevention have similarly diminished perceived susceptibility among partners and GBMSM without HIV. These perceptions contribute to high expectations—most participants equated cure with complete removal of the virus—yet many also considered alternative outcomes, such as durable ART-free suppression, acceptable and meaningful improvements. Despite predominantly passive engagement, affected communities remain interested in HIV cure research and seek greater awareness to make informed decisions about their involvement. To support this, researchers and clinicians, in collaboration with community partners, should develop effective communication strategies and actively involve people with HIV, their partners, and key populations throughout the research process. Meaningful engagement must remain central to HIV cure development; we should AIM to ENGAGE.