The language we use in our scientific communications can either empower or stigmatize the people we study and care for. The language we choose reflects our attitudes and can influence others. As scientists, researchers, clinicians, and advocates for the patients and populations we serve, we have a responsibility to learn about and employ the use of inclusive language in all communications.

The Denver Principles, written by HIV advocates in 1983, called for the use of respectful person-first language in the opening words: "We condemn attempts to label us as 'victims,' a term which implies defeat, and we are only occasionally 'patients,' a term which implies passivity, helplessness, and dependence upon the care of others. We are 'People With AIDS.'”

The term ―person-first language was officially coined in 1988 in a congressional act in support of people with disabilities and has since been adopted by the AMA Manual of Style. Although the field of infectious diseases has largely adopted and endorsed person-first language without controversy, it is important to acknowledge the nuances in preferred language within the
disability community. Person-first language (e.g., people with disability) has been endorsed by the American Psychological Association and is currently the recommended approach in many North American scholarly journals because it aims to empower individuals with disabilities.

People First Charter was launched in July 2021 during the Berlin International AIDS Society Conference to promote person-first language by creating and regularly updating terminology guidance and encouraging policy makers, researchers, conferences, journals, clinicians, and allied care providers to follow the guidance.

Throughout many people’s lives, they may feel oppression and discrimination based on gender, race, sexual identity, socioeconomic status, or other factors. The oppression and discrimination are often reinforced through language. Adding an HIV diagnosis can magnify this oppression and affect self-worth, confidence, and self-identity.

Over the years, repeatedly hearing language that reinforces stigma, oppression and discrimination ultimately affects the health and well-being of people diagnosed with HIV. Stigma and stress have a negative effect on their overall quality of life, which can affect family, children, jobs, and retention in health care among other social determinants of health. It is rare to find people living with HIV who have not felt stigmatized in some way.

NIAID HIV Language Guide is a useful tool to use when writing research grants (hptn.org). Many learn as children that the best way to respect others is to follow the Golden Rule: “Treat others as you wish to be treated.” Many advocates in the HIV community promote the Platinum Rule: “Treat others as they wish to be treated.” The NIAID guide aims to help scientists, researchers and administrators use fair, accurate and respectful language, but preferences can change and vary across groups and individuals. They can also evolve overtime.

Remain receptive to feedback from those who are most affected by stigmatizing language and prioritize expertise from their lived experiences. When possible, proactively seek input from marginalized voices. Recognize that there may not be a universal “right” answer for how to discuss a certain topic and that finding the most appropriate language may mean rephrasing or reframing a message instead of just replacing terms.

When researchers use inclusive language in their scientific communications (whether it is grant writing, research papers, interviewing and engaging communities) it is a step towards achieving truly equitable health care and research, but additional measures are urgently needed. Engaging historically excluded and underrepresented groups (including racial and ethnic minorities, cisgender women, transgender individuals, and economically disenfranchised populations in clinical research is critical to reduce health care disparities.

As researchers we have a responsibility to actively oppose HIV- and AIDS-related bias and stigma by educating ourselves about HIV and AIDS and changing the language we use when discussing them. Accuracy in our language when designing research studies, writing research grants or papers especially around HIV is critical. Errors in our word choices can communicate misinformation and harm clients, adding to the barriers that often prevent clients living with HIV from seeking medical and mental health care services or participating in research studies.

References:

Call to Action: Prioritizing the Use of Inclusive, Non- stigmatizing Language in Scientific Communications

Sara H. Bares1, Jasmine R. Marcelin1, Jill Blumenthal2, Paul E. Sax3

NIAID Language Guide 2020 (HPTN.org)

Cdc.gov- A Guide To Talking About HIV

https:// www.poz.com- HIV and Language

UNAIDS.org- UNAIDS Terminology Guide