During AIDS 2026 and as part of the Rethink. Rebuild. Rise. campaign, VirusOFF is launching Rio Briefs — a series of stories from Rio exploring how HIV prevention is changing today and what these changes mean for people in Central and Eastern Europe and Central Asia.
On 29 July, one of the key events at AIDS 2026 was not devoted to a new medicine or the results of a clinical trial. It focused on something without which no scientific achievement can change people’s lives: language.
The session, “Lost in translation: What different audiences need”, brought together scientists, journalists, community representatives and specialists who create educational content.
Its central question appeared simple at first: how can we communicate complex science clearly without distorting it?
The discussion, however, quickly moved far beyond choosing simpler words. It was about trust, responsibility, stigma, human dignity and people’s right to receive information that helps them make decisions about their own health.
The science may be the same. The way we talk about it cannot be
The moderator, Trey Watkins of the Gates Foundation, began with the reality in which we all live today: science is advancing faster than ever, while people are receiving an overwhelming volume of messages, emails, posts and videos.
The challenge is no longer only whether information is available. It is whether a person will notice it, understand it and see how it relates to their life.
“Communication helps bridge science and the real world. It must answer two simple questions: what does this mean, and what do I do with it?” Watkins emphasized.
The same research finding must be explained differently to a policymaker, clinician, journalist, advocate and a person deciding whether a particular HIV prevention option is right for them.
This does not mean changing the science or hiding its limitations. It means understanding what information a particular person needs, what language they speak and what decision they need to make.
Journalist and IAS HIV Prevention Ambassador Alexandre Putti of Fundo Positivo spoke about why data alone are not enough. People need to see how a scientific finding connects with real life.
For him, this is also personal. His own lived experience allows him to discuss HIV not as an abstract issue, but as part of an individual person’s life.
“When we speak only about data, people do not understand us. We need to talk about real life. Perhaps our challenge is not to teach the public to understand science, but for science to learn to understand the public,” Putti said.
This is especially important on social media, where accurate information competes with misinformation, sensational claims and simple answers to complex questions.
A scientific finding cannot simply be transferred from a research paper into a social media post. Communicators need to find the language used by their audience, understand their experience and reach beyond the circle of people who are already interested in science.
If a journalist does not understand a term, neither will the reader
Devex journalist Sara Jerving highlighted a common mistake made by researchers: assuming that the audience already understands professional terms and acronyms.
Most people are not expected to know the names of international programmes, scientific methods or treatment regimens.
“The problem begins when we assume that people have a background in science. Many people do not know these terms — and they should not need to know them to understand why the research matters,” Jerving noted.
When covering a complex subject, a journalist must translate professional language into terms their audience can understand. This is precisely where accuracy may be lost.
Researchers should therefore identify the main conclusion of their work before an interview, explain complex concepts in everyday language and remain available for fact-checking.
Jerving described this as a partnership: journalists and researchers need to meet in the middle so that a story remains accurate while also being clear to its readers.
Publishing the research is not the end of the work
Greg Millett, Vice President and Director of Public Policy at amfAR, reminded the audience that an article in a prestigious scientific journal may be important for a scientist’s career, but on its own it changes very little for people outside academia.
“Publishing is great. But it does very little to communicate with the rest of the world. You need to identify the one or two things that people should understand and remember,” Millett emphasized.
Scientists need to consider in advance who may find their results important, which journalists cover the issue, how the data can be presented simply and clearly, and which decisions the evidence can support.
A simple visual with one clear conclusion can sometimes influence public discussion more than hundreds of complex tables.
Millett also encouraged scientists not to wait for absolute perfection when a situation requires a rapid response.
“Do not let the perfect become the enemy of the good. Explain data in a way that makes sense to people, and do not miss the moment when those data can influence decisions,” he said.
This is not about abandoning accuracy. It is about being able to explain in a timely way what is already known, what remains uncertain and why action is needed now.
People remember a story, not a data point
Wame Jallow of Shuga Global spoke about how scientific knowledge can become part of stories in which people recognize themselves.
The first step is understanding the audience: where people receive information, which sources they trust, which life situations feel familiar to them and what form of storytelling may capture their interest.
The same content may attract little attention as a long video but reach millions of people in a shorter version. This does not mean that people do not want serious information. It means finding a way in which they are ready to receive it.
“People remember the character who influenced their life. They see themselves in a story, observe another person’s choices and reflect on their own. This is why stories grounded in lived experience help people understand science,” Jallow explained.
For Shuga Global, success is not measured only by the number of materials produced or views received.
“For us, engagement is critical. We need to hear from audiences about what resonates with them, what they do not understand and what they want to know more about. That dialogue helps dismantle myths, address misconceptions and build trust,” she added.
One wrong word can change the meaning of a scientific breakthrough
During the session, participants were shown how different online sources had reported on lenacapavir, a long-acting medicine for HIV prevention.
One source called it an “AIDS cure”. Another described it as an “HIV vaccine”. This was followed by terms such as “miracle drug” and simply “vaccine”, without any qualification.
But lenacapavir for pre-exposure prophylaxis is neither a vaccine nor a cure for HIV.
This is how a scientific finding gradually becomes something entirely different. First, a qualification disappears. Then, the concept itself changes. Ultimately, a person receives false information and may use it to make a decision about their own health.
To prevent this, a scientific message should not begin with the name of a study or a complex measure. It should begin by answering the question: why does this matter to a person?
Instead of saying “96%”, it may be clearer to say “96 out of 100 people”. Instead of saying “antiretroviral therapy inhibits viral replication”, we can say: “HIV medicines stop the virus from making copies of itself.”
Clear language does not reduce science to something simplistic. It makes knowledge accessible.
A person is not a diagnosis and is not “infected”
One of the most powerful moments was a presentation by Juan Michael Porter II on person-centred language.
He recalled that as early as 1983, activists established in the Denver Principles the right of people to determine how they should be described. Today, the appropriate term is “people living with HIV”.
Yet scientific articles, presentations and media reports still use terms such as “HIV-infected people”, “the infected” or acronyms that reduce a person to a diagnosis.
“How we speak about people determines how we treat them, and how we treat people defines our culture,” Porter emphasized.
Stigmatizing language is not simply a question of style or political correctness. It affects trust, the attitudes of health workers, the quality of services and whether a person feels able to seek support.
“When I hear stigmatizing language, I stop listening. Sometimes the offending word is all I can see or hear, regardless of how important the research itself may be,” he said.
Person-centred language begins with the person, not their health condition, behaviour or community identity.
Not “an infected person”, but a person living with HIV.
Not “an AIDS victim”, but a person living with HIV or a person who died from an AIDS-related illness, depending on the context.
Not “a drug addict”, but a person who uses drugs.
Not “a risk group”, but people who may have a higher likelihood of acquiring HIV, or people from key populations, when this is appropriate to the context.
Not “become infected with HIV”, but acquire HIV.
Not “spread HIV” when referring to a person, but transmit HIV — without blame or moral judgement.
If we do not know how to refer respectfully to a person or community, the answer is simple:
“Ask people from that community: how should I refer to you? Only the community itself can determine what it should be called,” Juan Michael Porter II urged.
This discussion has particular significance for Central and Eastern Europe and Central Asia.
In our region, the same information moves across different languages, countries, health systems and political contexts. A term that is appropriate in English cannot always be translated word for word into Ukrainian, Russian or other languages spoken in the region.
Translation, however, cannot be used as an excuse for stigmatizing language.
We must do more than translate words. We must preserve their meaning, accuracy and respect for the person. Communities should be involved in reviewing materials. Acronyms should be explained. Professional jargon should be avoided. Complexity should not be turned into sensationalism. A new prevention option should not be called a “vaccine” simply because that word attracts more attention.
A scientific publication is not the finish line. It is only the beginning of the journey towards public impact.
That journey passes through journalists, advocates, clinicians, public institutions and communities. At every stage, a scientific message can become clearer — or be distorted. It can build trust — or destroy it. It can uphold a person’s dignity — or once again reduce them to a diagnosis.
This is why language is not an optional addition to the HIV response.
Language determines whether a person hears a scientific message. Whether they recognize themselves in it. Whether they trust its source. And, ultimately, whether they can benefit from prevention, testing or treatment.
Science does not end when a study is published.
It begins to change the world when people can understand it — without losing their dignity in the conversation.
