Gay men in London who source their own supply of generic pre-exposure prophylaxis (PrEP) drugs, usually from overseas internet pharmacies, most often learnt about this possibility from people in their social network and would like more support from other PrEP users to be available. Nonetheless, clinicians’ endorsement of purchasing PrEP online was important in convincing men of the legitimacy of the practice and men would have much preferred the NHS to actually provide PrEP, according to a study in PLOS ONE.
After the PROUD study released its results in 2015, NHS England chose not to provide PrEP and then lost a legal battle with campaigners over its decision. In late 2017, it opened an implementation trial that will provide PrEP to 13,000 people. However, actually getting a place on the trial is not always easy and, at various times, some clinics have been unable to enrol any more gay men on the trial.
Given the slowness of the health system to respond to evidence of PrEP’s efficacy and the impossibility or difficulty of obtaining PrEP through traditional healthcare routes, many gay men have turned to the internet to buy generic PrEP for themselves. The activist websites I Want PrEP Now and PrEPster have shared information about how to do this. While the number of people actually buying PrEP online is unknown, it has been estimated at around 10,000. Moreover, between March 2017 and March 2018, the PrEPster ‘Buying Online’ webpage was viewed 100,000 times.
This is the first study to explore the experience of men who have self-obtained and self-administered PrEP. The researchers were particularly interested in finding out about their information and support needs.
While the situation may appear to be specific to England (in particular, the combination of PrEP not being available and of regulations that allow generic medicines to be imported for personal use), patient activism to get medications that are not readily available occurs in relation to other medical conditions. There have been buyers’ clubs to obtain modern hepatitis C treatment and transgender people often resort to purchasing hormonal therapies online. Moreover, in countries where PrEP is formally available, but there are financial barriers (such as insurance premiums) or the supply is rationed, individuals may sometimes decide to buy PrEP online. The study may therefore be relevant in a wider range of settings.
Sara Paparini and Will Nutland led three focus group discussions in the summer of 2017. In their discussion of the study’s limitations, the authors note that the second author’s prominent role in PrEP activism and the PrEPster website could have coloured participants’ responses.
Participants were recruited through advertisements on social and sexual networking apps. Twenty gay men who had bought their own PrEP took part – half were born outside the UK, almost all lived in London, most were in their thirties or forties, and all were university educated. The authors note that this self-selected sample of early adopters is unlikely to be representative of all gay men who obtain PrEP in this way. Australian and French studies suggest that substantial minorities of informal PrEP users have lower levels of education or are in their twenties.