Discussions of an economic crisis and of austerity
contribute to the manner in which people living with HIV in London make
treatment decisions and frame attitudes to treatment as prevention, according
to a small qualitative study presented to the IAPAC Controlling the HIV Epidemic with Antiretrovirals meeting in London this week.
Other poster presentations at the meeting highlighted a number of concerns and hesitations – among both people with HIV and healthcare professionals – that may hinder the implementation of HIV treatment for prevention purposes.
Peter Keogh recruited 45 people living with HIV to focus-group discussions (two groups of men who have sex with men, two groups of black
African migrant women, two groups of black African migrant men). During group discussion of biomedical HIV prevention,
the researcher noted frequent reference to economics.
Although the United
Kingdom is richer than many other countries, it is experiencing a recession and
its government is pursuing a strident austerity policy, especially in relation
to provision of health and social care. Of note, the focus groups were
conducted soon after the
announcement by the NHS in London of changes to its antiretroviral drugs
purchasing arrangements. There was anxiety about patients being asked to
switch drugs, as expressed by this participant.
“We are now getting
certain cheap drugs because they are trying to save money so you have to think
twice about what kinds of drugs you are being given and if they are working.”
Other changes in clinical practice in HIV clinics were also undermining the confidence that patients had
in the efficacy of their treatment. Patients now have less frequent and shorter
appointments, not always with the same doctor, making it harder to build a
trusting relationship. In these circumstances, discussions of sexual risk may
not always be full and frank. Moreover, as the intervals in between viral load
tests are increased, this participant was concerned that he could not be
confident that he was not infectious.
“We get our bloods
tested every four months at the moment and each time they say to you that it is
undetectable. But how do you know that it is undetectable in the times
Many participants used an economic style of argument –
cost/benefit analysis – to describe how the benefits of treatment had to be
balanced with the risk of long-term side-effects. There was concern that if
individuals are exposed to antiretrovirals for more years, side-effects would
increase. Moreover, participants were not certain that there would always be
sufficient investment in medical research.
prevention implies] that we all go on treatments as early as possible and we
all take as many treatments as we can so that we don’t give it to anyone else
and, don’t worry about the side-effects or having all your bones breaking and
no liver by the time you are 50 because by then, there’ll be a pill for that
too. But that’s like saying, ‘Oh just invest in my pension scheme and by the
time you’re sixty, we’ll have made enough money for everyone to retire.’ But
what if there are no advances? What if the money dries up or the pharma
companies lose interest and stop making the drugs we need to counter the side-effects?
Then we’re all left high and dry.”
With the drugs perceived to have significant costs attached
to them, both financially and in terms of their cumulative effect on the
patient’s body (kidneys, bones, neurological damage, etc.), there was a discourse
of a ‘responsible’ person with HIV being someone who used the drugs
conservatively and responsibly, for the ‘right’ reasons. Some asked whether
using antiretrovirals for the sake of enhancing sexual fulfilment trivialised
And there were discussions of who would be ‘deserving’ of receiving
early treatment, with individuals in monogamous relationships or who wish to
conceive most likely to be prioritised.
“So it’ll come down to who deserves the drugs.
There’ll be a hierarchy, you know, ‘You’re a bit of a slag so I’m not going to
give them to you. You’re a nice person so I’m going to give it to you.’”
A separate study of 44 black African people living in
England also identified issues to do with limited confidence in treatment as prevention,
but more in terms of being certain of the science. In general, a considerable number
of respondents had gaps and misunderstandings in their knowledge of HIV
treatment, with many unsure of their CD4 cell count or viral load, or liable to
confuse one for the other.
While three-quarters were familiar with the idea that having
an undetectable viral load could make them less infectious, many expressed
“I don’t believe in
that [Swiss] statement at all. And even though you are healthy and everything
and your viral load is undetectable you will definitely transmit HIV to
The researchers point to decades of ‘use a condom every
time’ messages, making it hard for participants to trust in other prevention
methods or to believe that they were not infectious. Treatment as prevention
was described as something that is not yet ‘proven’.
A significant number of female respondents were disempowered
in their relationships and had difficulties negotiating sex that they were
comfortable with. Several women were reluctant to engage with the idea of
treatment as prevention as they felt it would remove their ability to insist
that their partner use condoms, which were perceived to have benefits in terms
of avoiding sexually transmitted infections, superinfection or pregnancy. (Other findings from this study have been previously described on Aidsmap.)