Desperate Times Call for Desperate Measures: DIY PrEP in Europe

Did you know there were more new diagnoses of HIV in Europe in 2014 than at any point since the 1980s? In fact, Europe is home to the fastest growing HIV epidemic on earth. Faced with this fact, many people are taking prevention into their own hands as they begin to seek ways to secure PrEP even though access is highly limited in the region. In a new report by the PrEP in Europe Initiative we tell these stories.

Oral PrEP using TDF/FTC, known to be almost 100 percent effective at preventing HIV infection when taken as prescribed, was recently approved by the European Commission. This allows for the ARV combination of tenofovir and emtricitibine to be marketed as HIV prevention across the European Union.

Yet outside of France, where PrEP is available through the national health system at no charge, it is not available to anyone in a European health system unless they pay full price for the medication and find a doctor willing to write a prescription for it. Costs can reach several hundred euros per month. It has been available in the US through public and private health insurance plans for over four years now.

Gay men and other MSM in Europe are aware of the unacceptably high numbers of new diagnoses in their communities. These rates tell us that condoms alone are simply insufficient to protect all those at risk all of the time. The analogy with birth control is worth considering: women do not solely rely on male condom use to prevent pregnancy. Gay men, and other people at high-risk are therefore desperate to get their hands on the new blue pill, trademarked by the company Gilead as Truvada.

In "PrEP Access in Europe" by the PrEP in Europe Initiative, we set out the ways in which people across the European region are securing PrEP outside of traditional health systems and often outside of medical supervision. These include sharing pills among friends, smuggling pills into Europe from abroad, ordering generic versions on-line, and buying them on the black market. Emergency HIV prevention regimens for the "morning after," formally known as PEP, contain Truvada and are therefore also being mined for the blue pills, with the rest thrown in the bin.

These DIY (Do it Yourself) approaches are worrying to physicians and PrEP advocates alike. One concern is that some people may be taking PrEP without a confirmed HIV-negative test result. Being sure you are HIV-negative when starting PrEP, and going for regular HIV tests are key to safe, successful PrEP use. TDF/FTC can also have side effects, both minor and, in rare instances, severe that can only be dealt with in the context of a health setting -- so home-based PrEP might be a risky manoeuvre. Lastly, inadequate dosing or irregular drug supplies are not suitable when it comes to PrEP, just as they aren't suitable for ART. For example, popping only one pill at the weekend, or a few pills here and there, won't provide protection.

The Report shows that, in the absence of government and health authority action, DIY PrEP is the outcome. The fault does not lie with people who are seeking to take control of their HIV prevention options but with the national authorities that have failed to act.

The report calls on European governments and health authorities to take immediate action to make PrEP available to populations at imminent risk of HIV as a matter of urgency. Read the full report here.

Rebekah Webb is an HIV advocate and policy analyst with over 20 years of experience. She is a founding member of the PrEP in Europe initiative, currently sits on the Prevention Portfolio Steering Committee of the European AIDS Treatment Group, and is a partner in the management of AVAC's European ROAR advocacy program.