WHO: Stakeholder survey on terminology used for advanced HIV disease and AIDS

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Since the introduction of effective antiretroviral therapy, there has been a significant shift in how we discuss and understand late-stage HIV. In anticipation of the revision of WHO guidelines on HIV treatment and care, it has become necessary to revisit the assumptions driving the use of these terms. This follows feedback from the HIV community asking for better clarity on the use of the terms AIDS and advanced HIV disease.

A Delphi process on the evolving terminology around AIDS and advanced HIV disease was initiated in 2024. Its goal is to gather opinions on how these terms should be used in WHO guidelines. The process includes a maximum of three online surveys presenting the definitions and uses of the terms from 1984 until today and asking respondents to evaluate the statements.

WHO invites leaders in their communities, subject matter experts on HIV, including community and civil society leaders, doctors, nurses, midwives, researchers and medical educators, to take the first survey: How should WHO use the terms AIDS and advanced HIV disease in future policies?  The survey will take approximately 20–25 minutes to complete.

It is critical to ensure that the terminology being used adequately captures the experiences of people living with HIV. It must also address potential issues faced by the HIV community emerging from its use. Your insights will be invaluable in shaping how these terms will be used in future WHO health-related communications, guidelines and policy documents.

Background

WHO leads the health sector response to HIV and has been tasked to develop normative guidance that is clear and succinct, and ensures that appropriate care is provided for children, adolescents and adults with advanced HIV disease.

Advanced HIV disease is defined as individuals with a CD4 cell count <=200 cells/mm3 or presenting with a WHO Clinical Stage 3 or 4 AIDS-related illness in adults, adolescents and children above the age of 5 years. WHO has used the term advanced HIV disease in all its communications, with the intention to reduce stigma associated with its use and improve clarity around the term AIDS.

 

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