The history of PrEP.Jetzt
It was five years ago this summer of 2022 that a handful of like-minded PrEP activists joined me in launching the Homepage and the corresponding Facebook group "PrEP.now" had brought into being. However, in all the hustle and bustle with monkeypox this summer (officially, according to WHO standards, this disease is now called "Mpox"), this anniversary was somewhat overlooked.
May I briefly introduce myself? My name is Sven and I was born in 1976. I came out to my parents exactly at the turn of the year from 1997 to 1998 - retrospectively referred to by me as "the big bang at the turn of the year". My first contacts and encounters with the gay scene followed in the months that followed. Platforms like Gayromeo and the like didn't exist at that time, however, and the search was a little more complicated, especially away from the big metropolises. I met my future husband André in May 1998 - it was love at first sight, so to speak. Two years later we moved into a flat together, in the summer of 2004 we built our own home and in 2009 we registered our civil partnership. Kind of easy and classically bourgeois. So much for the back story...
In the beginning, our relationship was monogamous. With the emergence of Gayromeo, we occasionally thought outside the box and arranged dates with other guys. However, the number of dates per year was small and could be counted on one or sometimes two hands. We paid meticulous attention to safe sex, there were no exceptions. Then in 2011 we had a dramatic experience. One of our best friends died of sudden heart failure from one second to the next. Just like that. Without warning. As if with a snap of the fingers. I can still remember exactly when my husband called me at lunchtime and told me that our friend had died.
It was at this point that our own lives slowly but steadily changed over the following months. New friendships were made, which also developed into new best friends. And our sex also changed. Became more intense. We tried out more. You could also say "kinkier". Role-playing games with top and bottom elements. At that time, the idea of condomless sex with other guys slowly made its way to the top. At first it was just a wank fantasy, a hidden desire and longing for more intimacy. At some point I realised that my guy had signed up to "Barebackcity". This then characteristic green website always lit up the white wallpaper behind him in a shade of green in the semi-dark living room in the evening. In contrast to Gayromeo with its classic blue tones... *g*
And my curiosity also grew to try it out with other guys without a rubber. To finally put this lust-killing handling and covering with the rubber behind me. Not to mention the fact that I often had minor erection problems when I used a rubber. These first experiences were great. The sex was more intense. More sensual. Wilder. Everything that had been lying dormant deep inside me or us for the last few years was now bubbling up like a volcano.
We didn't have any great fear of HIV back then. Shortly before Christmas 2013, we were brought back down to earth. Two of our closest friends wanted to talk to us and then told us that they had both just tested positive and had both been infected with HIV. And we ourselves had also had sex with them a few weeks earlier. We then made an appointment at the local HIV centre to have blood taken for the HIV test. However, there were no more appointments available so close to Christmas, so we couldn't see the doctor until after Christmas. We were correspondingly nervous the whole time over the Christmas holidays. Fortunately, the test was negative. In the days and weeks that followed, we searched the internet intensively for information and deepened our knowledge. "Protection through therapy" became a matter of course for us in our sexual dealings with HIV-positive guys.
We tried to minimise the risk of HIV infection as much as possible - if you can do that at all. When we went to small private sex parties, for example, most of the other people were already below the detection limit and so we had no problems having sex with them. So we also ventured to the BiohazardMen parties in Berlin. Officially, these parties are only for HIV-positive guys. We went to these parties anyway and had a lot of fun. In this day and age, it would probably be described as "cultural appropriation"... 😉
From then on, we went for an HIV test every six months. Always with a little guilty conscience as to whether everything had gone well. Overall, however, we were quite relaxed about the subject, which the doctor also noticed every time. The fear of a possible infection didn't paralyse us, as many of our friends were already positive and we could see how well they went through life with the therapy despite an existing infection. Small uncertainties remained, of course. We had to trust that our sexual partners were taking the medication regularly. That "I am under proof" is actually the case. And if someone said that they were still negative, this was just a snapshot since the last test. Just like André and me.
It was during our summer holiday in California in 2015 that we came into contact with PrEP for the first time. We met three horny guys on the dating app Scruff and arranged a date. One was positive and tested positive, the second had the rare luck of being immune to HIV due to his genes [Editor's note: This sentence needs context and is therefore somewhat misleading. Details on the background can be found here in a short statement by the DAH from 2011.] and the third took PrEP every day. A tablet that prevents you from becoming infected with HIV. I heard about it for the first time and was amazed and enthusiastic. But I was soon disappointed again. The medication was not readily available in Germany. That changed in autumn 2016, when the drug behind HIV-PrEP, Truvada, was officially approved for this purpose, albeit only on a private prescription. And at 820 euros for a monthly pack, it was also far too expensive and unaffordable. But I also discovered for the first time that there were equivalent generics that could be ordered from outside Europe.
In the weeks that followed, I repeatedly discussed with my husband whether or not we should go on PrEP given the risk involved in our sex. We finally decided to go ahead and made an initial consultation with our HIV doctor. Although we were the first patients with this concern in his practice, the doctor was well prepared and gave us information material. One sentence stuck in my mind when the doctor mentioned that PrEP is officially only authorised as a "supplementary protective measure" together with condoms. He paused for a few seconds and then said slightly mischievously "but we can probably skip this point with you..." 😉
Initial attempts to order the generic drug from abroad failed at various points. Be it payment by credit card or the shipping diversions via the UK (still an EU member state at the time) to avoid German customs, who would have confiscated the medicine immediately. In the hustle and bustle of the pre-Christmas stress at our workplaces, we put the project on ice for the time being and wanted to tackle it again in the new year.
In February 2017 - half the country was down with the winter flu - my husband also caught it. He felt sick as a dog for over a week and stayed in bed. In mid-March, the time had come and we went back to the doctor. He issued the private prescription and took the blood for the HIV test, as you have to be negative if you want to start HIV-PrEP. That same day, I went through the ordering process at an online pharmacy in India and placed my first order for PrEP. My head was spinning at the end! Luckily, I had taken a few notes and screenshots. In the days that followed, I followed with fascination how the delivery from Asia arrived at Cologne-Bonn airport, was flown from there to the UK, from there it went to the parcel forwarding company and then by plane back to Germany and then on to the local parcel centre. The CO2 footprint clearly still had room for improvement in this direction... 😉
A few days later, I phoned for the results of the HIV test as usual. I could tell from the doctor's tone of voice that something was wrong. Unfortunately, it turned out that my guy had tested positive. The flu a month earlier had been the symptoms of an acute HIV infection. The thin thread holding the sword of Damocles had snapped at that moment and the sword ploughed loudly into our living room table, where we had both been sitting during the phone call. It was like a punch in the face so shortly before the start of the HIV PrEP. The relaxed attitude with which we had played down the possibility of infection in recent months and years had suddenly evaporated.
What's more, there was a risk that I could have been infected by my husband, as the last time I had sex with him was only a week ago. The normal HIV tests would only show a reliable result six weeks after the last risk contact. I couldn't and didn't want to wait that long. So I paid out of my own pocket for a so-called PCR test, which shows a reliable result after just two weeks since the risk contact. This IGEL service cost me just under 130 euros at the time. Fortunately, the test result I received a few days later by phone was negative. During the phone call with the doctor, I swallowed the first PrEP tablet with a sip of water.
I don't know what would have happened without PrEP. I was always most afraid of this situation. What if one of us got infected and the other didn't? Would we be strong enough (or should we say sensible enough) and only have sex with each other using condoms? Do without sex? For weeks? For months? Until my husband reached a stable detection limit? Fortunately, we didn't have to face this situation thanks to PrEP. Nevertheless, it is annoying that HIV hit us so shortly before the PrEP target run-in. Not with full force, but with a noticeable disruption to our daily lives. It wasn't and still isn't as easy to put away as we had previously imagined. If we had started PrEP six weeks earlier, everything might have been different.
It was this drastic experience that laid the foundation for the founding of PrEP.now and made me a PrEP activist. I swore to myself that no one should be allowed to contract HIV just because the ordering process for PrEP was too complicated and therefore no access to this medication was possible.
After some brainstorming with other PrEP activists, I then registered the domain prep.jetzt in April 2017 and ordered HIV-PrEP again from various pharmacies abroad and recorded and documented every step, almost every single mouse click, and then created illustrated PDF instructions and uploaded them to the PrEP homepage.
Together with other PrEP activists, we then set up the Facebook group of the same name in addition to the website. And what can I say, our offer was gratefully accepted. The German AIDS service organisation, gay magazines and gay community websites more or less directly referred to our offer of how to order PrEP from abroad. The visitor counter was spinning, the illustrated instructions were downloaded hundreds of times and orders for PrEP were placed. In the weeks and months that followed, a huge PrEP wave built up.
There were many wonderful experiences in this context. You noticed directly in the sex clubs and gay saunas that more and more people were "on PrEP". When I got into a conversation with other people after a hot number and the topic eventually landed on PrEP, where I introduced myself as a PrEP.now administrator and then looked into surprised and grateful faces. I could see straight away that the voluntary work in the community was well received and accepted. And yes, of course we were also a little proud of it.
But there were also a few negative experiences. Often via email, chats on dating apps, but also anonymously, but never actually in direct conversation. Some of these originators were simply surprised by the rapid development, did not (yet) like the new situation and therefore reacted negatively to PrEP. Others used swear words such as "PrEP bitch" or described HIV PrEP as the "new thalidomide for gays". The sometimes wild allegations and insults were an issue especially in the early days of PrEP, but now, after five years, I no longer get any negative reactions in this regard.
Around six months after the launch of PrEP.jetzt, a blue envelope from the Münster district government arrived in our letterbox in November 2017. As soon as I opened the envelope, I suspected what it might be. In typical officialese, I was informed that administrative offence proceedings had been initiated against me, which could be punished ("punished") with a fine of up to 50,000 euros.
I was accused of "advertising unauthorised medicines" with the PrEP ordering instructions. The fact that I was operating in a grey area with the PDF instructions was no real surprise to me, so there's no need to beat about the bush. But the fight against HIV was my priority. If I had wanted to, I could have put the whole website online completely anonymously. But I deliberately went the other way and built a proper legal notice with a telephone number into the homepage. However, I was probably a bit too naive to believe that an employee of an authority would actually call me to clarify the matter and reach an agreement in the case against HIV. Instead, the big club was immediately brought out. But anyone who knows me knows that I have a nerd gene and so I trawled through the log files of the server where the domains prep.jetzt and prepjetzt.de were hosted.
I was able to establish that the Münster district government had been looking at the homepage every few weeks since the beginning of September. Mostly limited to the page "How to get PrEP" and the imprint of the homepage. And as early as July and August, employees from the Federal Ministry of Health became aware of the homepage and were probably quite surprised at what was going on behind their backs. Apparently none of them had realised how hundreds of people were already ordering PrEP in Germany via the UK and how easy it was thanks to the instructions.
Nevertheless, I was somewhat disappointed by the letter from the district government. The matter can't really have been that urgent or dangerous because of the unauthorised medication from abroad if you still take the time to monitor the website for weeks and don't do anything about it. But thanks to great support and mediation from the Deutsche Aidshilfe Berlin, I was able to make contact with a young gay lawyer from Düsseldorf. Thanks to his work, the misdemeanour proceedings were dropped and I suffered no financial loss. At the same time, however, I had to undertake to permanently remove the ordering instructions from my website.
This made my stomach ache, even though it was now possible to obtain HIV-PrEP directly from German pharmacies with the "Blister-PrEP" introduced in autumn 2017, even if it was still somewhat limited at first and not immediately available in all cities. And a German manufacturer had also reduced the price of its generic drug to 50 euros.
Whether with or without the ordering instructions, the PrEP wave was unstoppable. In the following months, the PrEP.Jetzt offering was therefore expanded. Away from the ordering instructions and towards more in-depth information. Educational pages on "chemsex" and "safer use" when dealing with drugs, information on sexually transmitted infections and, of course, the large list of PrEP doctors on the Google Maps map.
I keep catching myself thinking about what would have happened if my husband hadn't contracted HIV. We would probably have just ordered PrEP for ourselves and then gone back to our own lives with all their daily ups and downs. I would not have become a PrEP activist. The PrEP.now website would probably never have existed. And neither would this text here. With this in mind, thank you for hanging in there and "listening" to me... 🙂
