At the opening of the BHIVA conference two days earlier, Dr
Nadi Gupta of Rotherham Hospital quoted one of her patients who was moved to tears when she heard about U=U. “The only thing that my
friends need to think about whenever they go out is what outfit they are going to
wear," the patient told her doctor. "All I ever think about is HIV. I haven’t been able to date anyone because
of my HIV. Now I can continue my life and live without the fear of passing it on.”’
Gupta was reporting on the questionnaire BHIVA
conducted in October last year about its members’ practice regarding telling their HIV-positive
patients about U=U. The 270 responses were anonymous so we don't know the staff roles of the respondents, although the majority are likely to be doctors working in HIV services.
Although only three respondents had never heard
of U=U, answers differed extensively among
the other 267 with regard to when they told patients and what they said.
Seven (2.75%) of the respondents said they discussed U=U “only
if asked” and six (2.35%) said “I don’t”.
Among the others, although 69% of respondents said they discussed U=U when
patients were diagnosed and 55% said “when they start treatment”, 48% said “when
they become undetectable” and 38% said “when they are fully adherent”. Although
these are not exclusive categories – so some clinicians could be discussing U=U
on all four occasions – it does leave open the question of whether some clinicians only discuss it once they feel sure that patients are at no risk of
transmitting HIV.
Some 12% said they had discussed U=U with patients of unknown HIV status, often to encourage testing.
BHIVA, in a
statement published in November 2018 after the survey was done, says that
U=U should be discussed “Proactively, with all people living with HIV at
appropriate points during care including, but not limited to:- at diagnosis,
when initiating treatment, to encourage adherence, when undetectable, and if
planning to conceive.”
The survey also
found that clinicians were using different terms to talk about the risk of
transmission when people are undetectable.
Thirty-seven per cent said they
used the term “zero risk” or “no risk”. But 22% preferred
using the phrase “next to zero”, 11% “negligible,” 10% “virtually impossible”, and
8.3% “extremely low”.
The Prevention
Access campaign that promotes the U=U message warns against the use of ambiguous
terms such as “negligible”, as they are “often misconstrued as still a
risk to take into consideration in sexual and reproductive health decisions.”
The BHIVA statement
says: “We recommend consistent and unambiguous terminology when discussing U=U
such as 'no risk' or 'zero
risk' of sexual
transmission of HIV, avoiding terms like 'negligible risk' and 'minimal risk'."
Eighty-five per cent said they still recommended that people disclose their HIV
to sexual partners if they are undetectable, but many added comments such as “yes, but I no longer tell
them they have to”, or “not always if
they’re out having fun, but disclosure is important in a long-term
relationship.”
Fifty-six per cent of respondents said they still advised patients
to use condoms, but many added phrases such as “yes, to avoid STIs or pregnancy”
or “yes, if in a non-exclusive relationship”. Nearly a quarter said they no
longer advised patients they had to use condoms, while 12% said they were not
sure what to say.
While 71% told patients U=U did not apply to breastfeeding,
8% said it did and 21% were not sure: if clinicians are this uncertain,
it is not surprising that patients are as well.
In both surveys, clinicians said they felt there should be
more material to show patients, more messages about U=U displayed in clinics/in
leaflets, and that ideally there should be another public health information campaign
about it, similar to the Iceberg
and Tombstone ads of 1987, but counteracting the fear of that campaign's message.