How we talk about U=U and the importance of precise language

Published 19, Oct, 2017
Author // Bob Leahy - Publisher

Bob Leahy on what words to use and what words to avoid when describing risk and ability to transmit applicable to an undetectable viral load – and why that’s important

How we talk about U=U and the importance of precise language

The language of HIV has evolved at an accelerated pace in recent years. It can be a struggle to keep up, to use the right words which are not only precise in meaning but don’t offend. And precision in language has never been more important around communicating that Undetectable = Untransmittable.

The campaign's message has now reached over 60 countries around the globe, with endorsements from over 400 organizations. Journalists have covered the topic regularly, from CNN down. But do they always get it right, describe exactly what is new to many about the risk of sexual transmission when one is virally suppressed? Unfortunately, no.

Why is that important? Because more often than not, sloppy or imprecise language leaves the unwitting reader with the impression that people with an undetectable viral load DO in fact pose a risk to their partners, however small. The science just doesn’t bear that out.

"Last month, the global medical and scientific community at the forefront of HIV research and care came together in Paris for the ninth International AIDS Society Conference, where they announced – unequivocally – that an undetectable HIV viral load means HIV is untransmittable." Dr. Julio Montaner, UBC-Killam Professor of Medicine; UBC-St. Paul’s Hospital Foundation chair in AIDS Research Editorial (August, 2017)

So that we are all on the same page, linguistically speaking, is what in journalism is called a “style guide”. HIV style guides exist already but need updating. Here’s one from HIVPlus mag. It tells writers what terms are OK to use and what are not. Different publications have their own variations. For example, at PositiveLite.com we no longer use “HIV/AIDS” when “HIV” is almost always more appropriate. We don’t use “PHA| or “PWLHIV” or similar; we use “people living with HIV” instead because we think it’s more respectful.

When it comes to U=U, uncharted territory in every style guide I know, we must set new rules. Bruce Richman, the Prevention Access Campaign’s peripatetic founder, frequently lectures people on what words to use and what words to avoid. Here is what he tells people about communicating ability to (sexually) transmit when one is durably virally suppressed.

 

Do not use:

Very unlikely

Highly unlikely

Extremely unlikely

Helps prevent transmission.

 

Instead use:

Will not transmit

Will not pass on

Cannot pass on

Do not transmit

Are not transmitting

Untransmittable

Stops transmission

Eliminates transmission

Note that “uninfectious” does not make the list but its use is generally considered a no-no, even though it was used in the early days of the U=U campaign. Why? Its use easily sets up the notion of a viral divide between those who are capable of transmitting the virus and those who can’t. The difference is potentially stigmatizing. So we avoid “uninfectious” now.

Moving on to describing level of risk, Richman lists the following dos and don’ts

Do not use:

Extremely low risk

Extraordinary low risk

Dramatically reduced risk

Virtually no risk

Nearly zero

Virtually impossible

Nearly impossible

 

Instead use:

Not putting others at risk

No infection risk

No measureable risk

Effectively no risk

Effectively zero risk

Zero risk

As close to zero as you can get in science

Neglible risk (but needs explanation what “negligible” means, i.e. too tiny to be of any significance

Precision in language also suggests that we make sure that when we are talking about U=U, we need to explain that it relates to sexual transmission; the verdict on mother-to-child transmission and injection drug use is still out as we await further research.

Again, all this is not about being picky. Precision in language is the only way we can avoid the impression that those who are durably virally suppressed place their sexual partners at risk.

About the Author

Bob Leahy - Publisher

Bob Leahy - Publisher

Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com founder Brian Finch. He joined PositiveLite.com at its inception in 2009 and became it's Editor a year later.

Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year.  He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network (OHTN) and the Canadian AIDS Society (CAS).  He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005.  Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for TheBody.com.

In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.

Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest  in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty-two years and three dogs.