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 between?”
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.
“[Treatment as 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 their importance.
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 considerable scepticism.
“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 someone.”
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.)
Roll-out of treatment as prevention may be slowed or diverted by perceptions such as these on the part of people living with HIV. But it may also be affected by the reservations of the health professionals who are expected to implement it.
Research with clinical and non-clinical staff in both England and Australia highlighted professional ambivalence. While a number of clinicians had prescribed treatment to individuals for the purpose of reducing the transmission risk (including those wishing to conceive) and many others had shared information with clients, a number were worried about the disruption to simple, clear health promotion messages about condoms.
While professionals trusted the science of treatment as prevention, many questioned how results from idealised trial settings would translate to the complex and diverse settings in which they work. Some were concerned about the pressures on both clinicians and people with HIV to initiate treatment earlier, with discomfort about the public health gain taking precedence over individual health benefits.
Finally, a survey of specialist nurses in the UK (with most respondents having worked in HIV for more than a decade) found that although most had the general skills required for discussing sex with patients, only a third felt confident discussing treatment as prevention, especially some of the more complex scenarios. Clinical guidance, local care pathways and educational resources for patients were all seen to be lacking.
Keogh P The Role of Austerity Discourses in Influencing Attitudes towards the Use of Antiretrovirals (ARVs) for HIV Prevention amongst People with HIV in London. Abstract 55.
Dodds C et al. Understanding Treatment as Prevention in Situ: Black-African People Living in England in Serodiscordant Relationships. Abstract 58.
Dodds C et al. Professional Ambivalence: The Views of HIV Service Providers about ARVs for Prevention in Three Settings. Abstract 59.
Evans C et al. A UK-Based National Survey of HIV Nurses’ Knowledge, Attitudes, and Practices towards TasP. Abstract 15.
All presentations from Controlling the HIV Epidemic with Antiretrovirals, London, September 2013. Abstracts are available here.