The introduction of antiretroviral therapy (ART) has significantly changed the landscape of HIV treatment and care. With ART’s success in managing the virus, many people with HIV can now lead long and healthy lives. However, the discussion around late-stage HIV, including terms such as AIDS and advanced HIV disease, has evolved, prompting the World Health Organization (WHO) to reconsider the language used to describe these conditions. In response to community feedback, WHO has launched a survey to gain input on how these terms should be used moving forward.
A Changing Landscape: The Need for Clarity
In 2024, WHO initiated a Delphi process to revisit the terminology associated with AIDS and advanced HIV disease. The aim is to gather opinions from various stakeholders on how these terms should be defined and used in future guidelines. The process involves a series of online surveys, with the first focusing on the appropriateness of terms in WHO guidelines and policies.
The terminology used to describe HIV has always been a sensitive subject. Terms like “AIDS” have historically carried a heavy stigma, reflecting the early years of the HIV epidemic when little was known about the virus and its progression. With advancements in medical treatment, the understanding of HIV has transformed. This has raised important questions about whether terms like AIDS continue to serve their original purpose or if they now contribute to unnecessary stigma and misunderstanding.
Who Should Weigh In?
To ensure the most accurate and inclusive terminology, WHO is seeking input from a wide range of stakeholders. This includes healthcare professionals such as doctors, nurses, and midwives, as well as researchers, medical educators, and community and civil society leaders. The survey is being conducted in multiple languages, including French, Spanish, and Portuguese, to ensure global participation and representation of diverse perspectives.
The input from these stakeholders will play a crucial role in shaping future WHO health policies and communications. The goal is to ensure that the language used in HIV care is sensitive to the lived experiences of people with HIV, while also reflecting the current understanding of the virus.
Understanding Advanced HIV Disease
Currently, advanced HIV disease is defined by WHO as individuals with a CD4 cell count of 200 cells/mm3 or lower, or those presenting with a WHO Clinical Stage 3 or 4 AIDS-related illness. This definition applies to adults, adolescents, and children over the age of five. WHO introduced the term “advanced HIV disease” to reduce the stigma associated with “AIDS” and to provide a clearer understanding of the condition.
The use of the term “advanced HIV disease” has been a step toward shifting the focus from the emotional and historical weight of “AIDS” to a more clinical and compassionate understanding of the disease. While this change has been well-received in many circles, there are still questions about whether the terminology adequately captures the complexities of the disease and its social implications.
The Role of Terminology in Reducing Stigma
The terminology used in health communications has a profound impact on how individuals perceive and experience the condition in question. In the case of HIV, certain terms can perpetuate stigma, which in turn may discourage individuals from seeking care or disclosing their HIV status. By consulting with stakeholders, WHO aims to ensure that the terminology used not only accurately reflects the clinical realities of HIV but also promotes a sense of dignity and inclusion for people living with the virus.
Why Your Input Matters
The ongoing consultations are more than just an academic exercise they represent an opportunity for people with lived experience and healthcare professionals to directly influence the way HIV care is discussed globally. The language we use in policy documents, clinical settings, and public health campaigns shapes how society views people with HIV and the support they require.
As WHO revises its guidelines and health policies, the feedback gathered from these surveys will be instrumental in creating terminology that is both scientifically accurate and socially responsible. By participating, stakeholders can help create a more supportive and stigma-free environment for people living with HIV worldwide.
In conclusion, the WHO survey on the terminology used to describe AIDS and advanced HIV disease is an important step in the ongoing effort to provide better care, reduce stigma, and reflect the evolving understanding of HIV. The goal is clear: to create a framework that helps everyone involved in HIV care, from individuals to communities and healthcare providers, feel more confident and compassionate in their approach to this complex disease.
