What do you read, to track 25 years of HIV stigma and progress? Words, words, words . . .

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From the first International AIDS Conference in Atlanta with about a thousand attendees in 1985, to the upcoming one in Amsterdam where about 18,000 are expected later this month, the annual, and then biennial meetings served as milestones in a slow climb of scientific, political and community progress against the pandemic. Memorable peaks include the 1996 conference in Vancouver, when findings on the medicine that would change HIV from a death sentence to a chronic and manageable condition were presented, and the 2000 conference in Durban, when the recognition of the pandemic’s worldwide toll finally sparked the political will that in turn finally spurred the launch of the U.S. President’s Emergency Plan for AIDS Relief and the Global Fund to Fight AIDS Tuberculosis and Malaria.

Along the way, a recently released report shows, a slow shift in the words used to describe people affected by HIV, their treatment, and greatest risks, marked a more incremental progress. Using software that combed through more than 80,000 abstracts, spanning a quarter of a century of International AIDS Conferences, researchers examining the evolution of terms surrounding the pandemic call the progress “bi-directional,” with science influencing more nuanced language, and language dissipating stigmas surrounding the virus.

With word clouds and line graphs, their report, Trends in HIV Terminology: Text Mining and Data Visualization Assessment of International AIDS Conference Abstracts Over 25 Years shows an evolution of perceptions that more than 20 years into the pandemic left terms that included “AIDS carrier,” “HIV victim” behind, and led to the decline of the terms “HIV positive,” and “HIV infected,” for “people living with HIV.” The report also shows a shift surrounding perceptions of those at greater risk, from “homosexual” which dropped steadily from 1989, to “men who have sex with men” which peaked in the last year surveyed, 2014. It shows the use of the word “prostitute” declining steeply (from its peak in 1991) to disappear from abstracts by 2014, while use of the term “sex worker” rose almost as steeply, and the slow, recent rise of “sex for money.” A word cloud shows “drug addict,” “drug abuser,” and “drug abuse,” all accepted terms in 1989, largely replaced by “injection drug user,” and “people who inject drugs,” by 2014. Finally, a line graph shows the nearly vertical climb of the term “pre-exposure prophylaxis” — even better known as PrEP — from 2010 on.

The evolution has not ended, the authors note, recommending a continued quest for words and phrasing that reflects reality over stigma and stereotypes, and using terminology preferred by those being described. They recommend further research as well, to gain greater insights on the effects of words on outcomes that include access to care and effective treatment.

Stay tuned . . . Science Speaks will report live, July 23 -28 from pre-conferences and sessions on breakthroughs, challenges, and words from AIDS 2018, in Amsterdam.



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