For more than six months, Milan has been one of more than 5,000 gay men taking part in the international PrEP study DISCOVER to participate. The aim is to test whether the combination drug Descovy is just as suitable for HIV pre-exposure prophylaxis ("pills to protect against HIV") as its predecessor Truvada and the Truvada generics. We accompany the 26-year-olds with interviews over the three years of the study.
As part of "Safer Sex 3.0", various gay men on the IWWIT blog talk about how they protect themselves against HIV, whether with condoms, PrEP or protection through therapy. We encourage everyone who wants to protect themselves against HIV to choose the best safer sex method for them.
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Question: When we met talked for the first time about your experiences as a participant in the DISCOVER studythe accompanying tests had revealed an irregularity in your blood count. Was the excitement justified?
Milan: No, that was ultimately a false alarm, the doctor in charge thought she had detected an unusual value, but it turned out to be completely harmless.
I had waited so long for PrEP that I was actually a bit paranoid and worried that I would now have to stop PrEP. But this worry was completely unjustified.
How have you tolerated the PrEP medication so far? You don't know whether you are receiving Truvada or the follow-up preparation Descovy.
I tolerate the pills very well and have had no side effects so far.
You have now been taking the pills every day for several months. Do you still have to remember to take them every morning?
For the first five or six months, I automatically thought about it every day. In the meantime, however, I had a lot on my mind and therefore forgot to take the tablets twice. That annoyed me a bit - even though it doesn't affect HIV protection if you forget to take the medication once. That's how the doctor explained it to me.
I now have a tablet box with a compartment for each day of the week. It's right in front of me at my desk, so I can't miss it under any circumstances.
"PrEP has now become something completely normal for me"
Are you still thinking about taking PrEP? Is it still something special?
No, it's now something completely normal for me and has become a part of my life. The initial excitement has subsided. It would also be unrealistic to expect this feeling of excitement to last for the entire three years that I am expected to take part in the study.
When you started PrEP, you had good reason to feel part of a group with very special freedoms.
That has changed at the latest, since PrEP from 50 euros is available to everyone in the pharmacy! This means that PrEP is now theoretically available to everyone. That's great.
However, it's not just about sexual freedom, it also means a lot to be protected from HIV. PrEP also frees you from always having to think about HIV and the fact that this virus could mark your body with this "positive" label for the rest of your life - even though the medical possibilities now enable people with HIV to lead a fairly normal life.
Of course, there are some benefits as a study participant, such as the regular comprehensive health checks and free medication. I'm grateful for that. But that's about it. I'm very happy that PrEP has now made it into pharmacies on a regular basis and that many more people can benefit from it. It's right and important that it's available to everyone.
Have you also got used to the sexual freedom that PrEP gives you?
"The fact that I don't always have to think about condoms is still very liberating for me today."
The fact that I couldn't always keep myself in check was the reason why I wanted PrEP. It's not that I don't have sex with a condom, but that happens quite rarely in comparison.
The fact that I don't always have to think about condoms is still very liberating for me today. I don't want to imagine what it would be like again without PrEP.
However, I don't see PrEP as a lifelong solution either, if only because of the possible effects of the medication on the body [Editor's note: Most people tolerate PrEP well]. After all, researching these side effects is also the reason for this study. When it is over, I will look at the results and then possibly decide to continue with PrEP.
Are you concerned about possible unexpected long-term effects?
Developments in medicine, and especially in pharmacy, are moving at breakneck speed. That's why I'm sure that over the years there will also be PrEP drugs that place even less or no strain on the body.
Today, we may be made aware of the possible risks of taking certain medications for years that will no longer exist in the foreseeable future. That's why I'm not really worried about long-term side effects and enjoy the opportunities I have. Because I'm young now, not later.
Do you have more sex with more partners with PrEP than before?
"If I go to a sex club today, ..."
Much more! When I go to a sex club nowadays, I sometimes actually have sex all night long, again and again and with different people. Before, without PrEP, I went there too, but I usually only had sex with someone once.
This was a not entirely rational barrier to protect me from possible infection risks. At the same time, however, it drove me completely crazy. You can see all the others - the ones below the detection limit [Editor's note: With successful HIV therapy, HIV is not transmitted even during sex without a condom - undetectable = not transmissible] or are on PrEP - how they let off steam there without restraint. Only you yourself have very limited fun.
When you go to clubs like this today, do you tell the other men that you want to have sex without a condom?
I always make it clear to the guys straight away that I prefer bareback sex, and usually also that I'm on PrEP. But normally people don't talk about it at all. When locals go to places like this to have sex, the condom is usually no longer part of it. At least that's my experience, that's the scene here. I don't know of any other place in the world that is as sexually free as Berlin.
By "free" do you also mean the freedom offered by the protection provided by therapy and PrEP?
"Conversations like that can really ruin the erotic tension."
Exactly, you don't have to talk about these things as foreplay: whether with or without a condom, or why it works without one. Such conversations can really ruin the erotic tension.
This happens, for example, when you encounter a tourist (laughs). You're so used to having sex without a condom in places like this that I'm completely surprised when someone suddenly pulls out a rubber while making out.
How do you react then?
Should I be honest? For me, that's usually the end of it. If the chemistry is really good, I can of course have sex with a condom, but it just doesn't make me really horny and I don't enjoy it that much.
But then I'm also not in the mood to have an educational discussion about PrEP. It's not the place, it's not the time and it's not my job.
I've tried that a few times, but it just doesn't work in a situation like that and, frankly, I don't feel like it either. After all, I came there to have sex and not to have to explain my way of having sex. I'm not alone in this experience, by the way.
That sounds a bit arrogant.
"I quickly photographed my box of medication and sent it to him, so he was reassured."
I am aware of that. Of course, I know that we are much more advanced in these matters here and therefore also privileged. Someone for whom sex automatically means sex with a condom is naturally overwhelmed by the situation.
They may have never heard of PrEP, or only heard a little, and understandably harbour doubts about its effectiveness. But I doubt that I am the right person in this place, in this context, to communicate these medical facts in a trustworthy manner (laughs).
"I could well understand why he was so panicked. "
So I can't convince him of the effectiveness of PrEP, nor do I want to persuade him to have sex without a condom. It won't lead to anything and will only ruin the evening for both of us.
Once someone was unsure, but he ended up having sex with me. The next day, he wrote to me on Facebook: "Are you really on PrEP?" I could well understand why he was so panicked.
If you simply don't know much about PrEP, a situation like this is naturally upsetting. I then have to think about how I freaked out in the days before PrEP when I did have sex without a condom. So I quickly photographed my box of medication and sent it to him, and he was reassured.
More sex with a higher number of partners mathematically increases the risk of contracting sexually transmitted infections (STIs). What is your balance sheet like now?
Very manageable, I think - in relation to how much sex I've had since I've been on PrEP.
And what does that mean in figures?
"The infections were diagnosed at a very early stage and then treated immediately."
In the very first month Chlamydia and three months ago I had gonorrhoea in my throat. Both times the infections were detected during the quarterly STI examinations that are part of the study.
The infections were diagnosed at a very early stage and then treated immediately. But talking about STIs in connection with PrEP is actually irrelevant here, because gonorrhoea and chlamydia, for example, can also be transmitted during licking and blowing, regardless of whether you are on PrEP or using a condom. I could also have got the infections during sex with a condom.
But when we talk about PrEP, we are talking about HIV protection. And as far as HIV protection is concerned, PrEP is at least as safe as a condom, if not more so. It therefore makes no sense to use the risk of infection from other STIs as an argument for rejecting PrEP.
How frequent are the visits to the doctor as part of the study?
Every three months.
What exactly is happening?
In the waiting room, I first have to fill out a questionnaire. The questions are always the same: How many people you've had sex with without condoms since your last examination. How many times you have been active or passive during anal intercourse. Whether you have taken the tablets every day or how often you have skipped taking them and why.
During the blood test, we are also asked in person whether there were any side effects. And we are always offered condoms, which we can take with us free of charge if we want to.
Is there anything about these quarterly check-ups that is not going quite so smoothly?
"You're going to laugh now..."
There really is such a thing, and you're going to laugh now: it's the urine samples. But if I go to my appointment in the morning, of course I've already had a wee, and then I can't go to the surgery. I feel most sorry for the people who only have their appointment in the afternoon. They must be completely hungry! We're not supposed to have eaten for five to six hours beforehand.
Another study participant told me that he sometimes felt uncomfortable being asked detailed questions about his sex life by female doctors during check-ups.
I have no problem with that. These doctors are experienced and there will be nothing that could surprise them (laughs). I think someone who has a lot of sex shouldn't be so uptight if they have to have their bum looked at by a doctor twice a year for the sake of their health.
There was only one situation that seemed a bit strange to me, namely when a doctor did an anal swab on me. She then asked me if I would like to do it myself in future. They showed me how to do it, and it really isn't an art.
"I hadn't expected such vehement comments"
After our first interview was published, there were quite a few heated comments on Facebook. How did you perceive it yourself?
I was prepared for the fact that there would be negative comments from people who are fundamentally critical of or opposed to PrEP. But I hadn't expected that some of them would be so vehement.
I was therefore pleased that people got involved in the discussion and supported my position. However, I then also tried to look at the interview from a distance and was unsure whether one or two sentences might come across as naive or irresponsible as a written interview, even though that wasn't the intention. However, it was important to me during our interview to answer as honestly and clearly as possible.
I was particularly struck by the fact that the highly critical commentators themselves often lacked key information about PrEP.
"I was particularly struck by the fact that the highly critical commentators themselves often lacked key information about PrEP."
And I have the impression that some men react so emotionally and angrily because - perhaps without realising it - they are secretly jealous and angry that PrEP was not available when they themselves were young. That's why factual arguments and information don't get you much further in the discussion.
Does that annoy you?
I can even understand this behaviour to a certain extent. As you get older, it becomes more difficult to go along with or accept new developments, especially if they call into question or change things that were previously a fixed, fundamental part of your life.
This applies not only to medical advances such as PrEP, but also, for example, to technical innovations that people are not familiar with and therefore ridicule or reject as unnecessary. I have already realised this myself. For example, I don't understand how young people today can spend so much time on Instagram. For me, that's complete rubbish. It's an important social medium for them.
So in a way, it is completely normal for us to defend the fixed coordinates of our own lives. For many gay men, this also includes the ingrained understanding of safer sex as sex with a condom.
But that doesn't change the fact that the younger generation, like me, will take new developments like PrEP for granted as a natural form of safer sex.
And just because I or others want to take advantage of advances in the pharmaceutical industry that allow us to experience sex more intensely - i.e. without a condom and without the risk of HIV - does not make us irresponsible people. Taking PrEP proves exactly the opposite.
The first interview with Milan about his experiences with PrEP and as a participant in the DISCOVER study was published in August 2017: "PrEP is just a tool and you have to learn how to use it"
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