A new study suggests healthcare providers rethink how they talk to people living with HIV about low viral loads. They say that it could be causing confusion over the “Undetectable = Untransmittable” message.
It goes as far as calling it “harmful medical practice” to tell people specific figures if they have less than 200 viral copies/ml.
The study appeared in Open Forum Infectious Diseases. Researchers at the Miller School of Medicine at the University of Miami authored the paper.
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The basis of their conclusion comes from changes in the sensitivity of tests to determine viral loads. In the past, anything below 200 copies/ml was “undetectable”. There has been no recorded case of anyone with less than 200 copies/ml transmitting the virus to others.
This led to the undetectable=untransmittable message. People newly diagnosed with HIV are usually placed on medication and informed that if they become undetectable, they cannot transmit the virus. That’s reassuring for them and for their partners, and helps reduce stigma around HIV.
However, in recent years, viral load tests have become increasingly sensitive. Some can detect viral loads as low as 10 copies/ml.
This is creating some confusion.
The study uses the example of one young woman diagnosed with HIV. She was informed that with medication, she would become “undetectable” and could not transmit the virus. Her viral load duly came down below the 200 mark. However, over the course of two years, her result hovered around the 20 copies/ml level.
Despite assurances from her doctor, “she became increasingly frustrated about being unable to achieve an ‘undetectable’ status based on reported laboratory values. She was skeptical about her lack of infectiousness, was dissatisfied with her ART, and was reticent to engage in sexual relationships, which she had avoided since her diagnosis.”
Does telling do more harm than good?
The authors go on to suggest, “Because [viral loads] deemed detectable but [less than] 200 copies/mL have not demonstrated meaningful clinical implications, and have the potential to cause confusion and mistrust among patients and providers alike, we consider reporting these values to be a harmful medical practice with a negative public health message.”
They suggest that providers need to think about how results are presented. One option could be for providers to clearly state alongside any figures less than 200 that there is “no risk of sexual transmission”.
Another option is that viral loads below 200 copies/mL “could be automatically reported as undetectable, with the precise value hidden but available to providers to disclose with further explanation if needed.”
Either way, it says providers need to emphasize that anything less than 200 copies/ml is considered undetectable and there is zero risk of transmission. It could even be stressed at the time of diagnosis. The study suggests patients are informed, “Our goal for treatment is a VL less than 200 and CD4 count above 200.”
It goes on to call for further research into whether having a low viral load (between 0-200) has any long-term negative implications. They also call for more studies to determine “the value—or harm—of highly precise VL [viral load] reporting.”
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Brian
Terrible advice. This sounds like, “Patients are stupid, so doctors should dumb themselves down to the level of their patients.” Ridiculous. If the number is 20, then the number is 20. Data should not be manipulated to protect the feelings of a stupid woman who can’t understand biology or math.
Surely you could produce a pamphlet or other informational resource that could be handed to the patients — something pre-written, in consultation with doctors and communications experts — that would cover the most common questions from patients. There are plenty of ways to teach people without having to lie to them.
Baron Wiseman
Exactly.
“I can explain it to you, but I can’t make you understand it.” – R. Gaston,
still_onthemark
‘One option could be for providers to clearly state alongside any figures less than 200 that there is “no risk of sexual transmission”.’
That’s not lying. That’s true.
‘Another option is that viral loads below 200 copies/mL “could be automatically reported as undetectable,”‘
THAT could be construed as lying.
cheks
It wouldn’t be the first time the public is “lied” to in this way. “Fat-free” foods must have less than 0.5 gram of fat per serving, but they aren’t literally free of fat. We could tell people you are “undetectable” and put the actual value next to this “designation”. It would be more of a status or designation than that the load is literally “undetectable”.
bachy
It’s the problem of substituting slogans (U=U) for medical facts. Slogans are simplifications designed to support psychological health. Medical facts are facts.
cheks
But the slogan was medical fact. The issue is that now tests have become more sensitive so loads that were undetectable are now detectable. And “slogans” are easy for people to remember.
Bromancer7
Doctors can fix many problems, stupidity is not one of them.