Most PrEP users in Berlin obtained it from informal channels

Over half of men who have sex with men (MSM) living in Berlin who were using HIV pre-exposure prophylaxis (PrEP) accessed it through informal sources, without consistent medical monitoring, according to a recent study published in PLOS ONE.

The results also revealed that while a high percentage of men in the study were aware of PrEP, a sizable proportion also felt that they were not well-informed about it, mainly getting their information through word-of-mouth sources as opposed to formal channels. Almost a quarter of participants were engaging in risky sexual behaviours without accessing PrEP.

While the incidence of HIV among MSM in Germany has fallen from 2500 cases in 2013 to 2100 cases in 2016, Berlin has a higher HIV incidence than the rest of the country – 10.1 per 100,000 as opposed to 4.2 per 100,000. The nationwide decline in infection rates has been attributed to Treatment as Prevention (TasP).



Having sex without condoms, which used to be called ‘unprotected’ or ‘unsafe’ sex. However, it is now recognised that PrEP and U=U are effective HIV prevention tools, without condoms being required. Nonethless, PrEP and U=U do not protect against other STIs. 

treatment as prevention (TasP)

A public health strategy involving the prompt provision of antiretroviral treatment in people with HIV in order to reduce their risk of transmitting the virus to others through sex.

post-exposure prophylaxis (PEP)

A month-long course of antiretroviral medicines taken after exposure or possible exposure to HIV, to reduce the risk of acquiring HIV.


Studies aim to give information that will be applicable to a large group of people (e.g. adults with diagnosed HIV in the UK). Because it is impractical to conduct a study with such a large group, only a sub-group (a sample) takes part in a study. This isn’t a problem as long as the characteristics of the sample are similar to those of the wider group (e.g. in terms of age, gender, CD4 count and years since diagnosis).


In relation to medicines, a drug manufactured and sold without a brand name, in situations where the original manufacturer’s patent has expired or is not enforced. Generic drugs contain the same active ingredients as branded drugs, and have comparable strength, safety, efficacy and quality.

Generic PrEP has been available, with a doctor’s prescription, since the autumn of 2017, but public health insurance in Germany does not cover the cost of PrEP or its associated tests.

This is in contrast to a country such as France where PrEP has been authorised for use and has been fully reimbursed since 2016. The city of Paris accounts for 92% of PrEP usage and the vast majority of those who access PrEP in France are MSM. The focused use of PrEP in specific communities has helped bring down HIV infection rates in large cities such as San Francisco where PrEP has been used since 2012.

Considering the powerful role PrEP can play in reducing new infections, the authors of this study wanted to look more closely at knowledge and use of PrEP, factors predictive of a desire to use it and a history of PrEP use among MSM in Berlin. They conducted a cross-sectional survey of adult MSM whose HIV status was negative or unknown, between October 2017 and April 2018. The surveys were distributed at HIV testing and counselling centres and HIV specialist practices in Berlin. While the former are walk-in centres offering anonymous testing for HIV and other STIs, the latter are owned and staffed by doctors and offer a range of services to LGBTQ individuals, whether or not they are living with HIV.

A total of 470 questionnaires were suitable for final data analysis. Participants’ mean age was 37 years and two-thirds were university educated.

Eighty-one of the respondents (17.2%) had used PrEP, with under half of those (44.4%) receiving a prescription from a doctor. Other sources included foreign import (35.8%), using pills originally prescribed as post-exposure prophylaxis (PEP, 18.5%) and using a friend’s HIV medication (11.1%).

Factors that were positively associated with PrEP use included having a university degree, having been born outside Germany, belonging to a higher sexual risk group, and having friends or acquaintances living with HIV.

Regarding attitudes towards the cost of PrEP, the majority of all participants felt that the cost should be covered by public health insurance. If PrEP had to be paid for, an acceptable price for most participants was 50 euros or less (59.1%), followed by 100 euros or less for a smaller number of participants (21.3%).

While awareness of PrEP was good (90% of the sample reported that they were already aware of it), one third of those who were aware of PrEP said that they were not well-informed about PrEP. Sources of information about PrEP revealed that a high percentage gained knowledge from friends or acquaintances (61.7%), while a much lower percentage gained information from doctors (22.7%) or other formal sources.

In terms of sexual risk behaviour, 17.4% of participants had been diagnosed with an STI in the last six months, while 32.1% had had anal sex with two or more partners without using a condom. Interestingly, among participants who reported never having used PrEP, almost a quarter indicated that they had recently had condomless anal sex with multiple partners.

Of those who had never used PrEP, 42.4% indicated that they would like to use PrEP. Factors that were positively associated with, and positive predictors of, the desire to take PrEP included higher-risk sexual behaviour, perceived riskiness of own sexual behaviour as well as expressing the need for a doctor to prescribe PrEP. Having condomless sex with multiple partners emerged as the strongest predictor of a desire to use PrEP, indicating that higher-risk groups would benefit from widely available PrEP.

Two-thirds of participants agreed that PrEP is a safe way to prevent HIV infection. Men who felt well informed about PrEP were more likely to see PrEP as safe. The main perceived risks were acquiring other STIs while on PrEP and side-effects.

While this study showed a high awareness of PrEP among MSM in Berlin, it also indicated that fewer than half of those who knew about PrEP felt well informed. A lack of information was also cited as a barrier by almost one-third of those who had never used PrEP.

The lack of education and knowledge regarding PrEP is of particular concern as a high number of those using PrEP accessed it through informal sources. This raises public health concerns associated with informal PrEP usage in the absence of prior testing and ongoing monitoring. Informal PrEP usage could lead to the development of drug-resistant HIV strains which are harder to treat. Indeed, the survey revealed that those who were taking PrEP correctly were significantly more likely to have received a prescription from a doctor.

As Berlin has joined UNAIDS’ Fast-Track Cities initiative and has committed to reaching the 90-90-90 targets (90% of those with HIV should be diagnosed, 90% of those diagnosed should be on treatment and 90% of those on treatment should be virally suppressed), it is imperative that knowledge and uptake of PrEP is increased. Considering that this study revealed that a sizable number of men who engaged in condomless intercourse had never used PrEP, the authors recommend that access to PrEP and education regarding it should be improved in regular health services.


Werner RN, Gaskins M, Ahrens J, Jessen H, Kutscha F, et al. (2018) Knowledge and use of HIV pre-exposure prophylaxis among men who have sex with men in Berlin – A multicentre, cross-sectional survey. PLOS ONE 13(9): e0204067.