Milan (26) takes part in the PrEP study DISCOVER part. The aim is to find out whether the combination drug Descovy is just as good for the HIV pre-exposure prophylaxis can be used like its predecessor Truvada. Milan reports on his motivation and experiences in the IWWIT blog.
A lot of money is at stake for the pharmaceutical manufacturer Gilead. For a long time, its HIV drug Truvada was the only one approved for PrEP - in the USA since 2012, in Europe since the summer of 2016. In the meantime equivalent imitation products on the market in Germany as well even if Gilead does not consider this to be lawful . However, if Descovy proves to be equally or even better suited for PrEP (because it has fewer side effects) and is approved for this purpose, Gilead would again have a market advantage.
In order to prove the suitability of Descovy for PrEP, the large-scale comparative study DISCOVER was launched at the beginning of this year, in which around 5,000 HIV-negative men and trans* women with an increased risk of infection are taking part in the USA and Europe. The medication is free of charge for the participants, as are the study-related examinations and laboratory tests.
This means that for the first time in Germany, a small number of interested parties have free access to Truvada. However, the participants do not know whether they will receive the proven HIV-protective drug or its successor Descovy.
One of 5,000 participants in the DISCOVER PrEP study
Milan found out about the study in a rather unusual way: An acquaintance of his happens to work in one of the five HIV focal point practices that are taking part in the study in Germany and providing the participants with medication and medical support for at least 48 weeks.
Milan first heard about the possibility of protecting himself against HIV with PrEP around two years ago: during a visit to the doctor.
"The medication alone would have cost me 800 euros a month"
"At the time, I was having sex where there was a risk that I could have been infected," says Milan. The doctor treating him prescribed a precautionary HIV treatment, known as PEP (post-exposure prophylaxis)and also informed him about PrEP in this context.
As ideal as this variant of HIV prevention seemed for Milan: "The medication alone would have cost me around 800 euros per month, which I didn't want to and couldn't afford." Participating in the DISCOVER study, on the other hand, offered the prospect of receiving PrEP medication free of charge for one, maybe even two years. Without further ado, he applied.
A year of waiting for the start of the degree programme
His friends, whom he had told about his application, kept their fingers crossed for him - and now had to endure his impatience at times. After all, patience was particularly important in the run-up to the study.
The start and thus also the selection of participants was postponed several times, The applicants were repeatedly put off. For almost a year, Milan heard nothing more from the practice he had contacted as an applicant. Then he finally phoned to enquire.
As it turned out, this was just in time, as the list was closed just a few days later. Milan got one of the last places.
Secret hope for sex without a condom
And if it hadn't worked out? "I don't know what I would have done then," says Milan.
"When I wasn't so sexually experienced, I always used a condom, but then skipped it more and more often. In my dating profile, I had clicked on 'always have safe sex', but I always dated with the secret hope that sex would perhaps be without a condom after all. It was kind of exciting not knowing until the last moment whether this wish would be fulfilled."
Always a guilty conscience
Milan tried to eliminate the risk of infection as far as possible. "The safest thing was to have sex without a condom with HIV-positive men below the detection limit. But there were always situations that made you feel guilty later on."
An example? Milan laughs sheepishly. "You get a bit high, go home with someone, and as soon as you sober up again, you ask yourself: 'What actually happened? And then you have good reason to worry."
"How much longer should I go on like this?"
Milan experienced such situations three times in two years and then had a PEP prescribed to be on the safe side. "That's crazy, isn't it? How much longer could I go on like this? That's why I absolutely had to get PrEP."
Before he could actually start PrEP, Milan underwent a comprehensive medical examination, was checked for sexually transmitted infections including HIV and informed about the study. A week later, he underwent another rapid HIV test and was given his first month's supply of tablets at this appointment.
Two pills a day, one of which is a placebo
Milan now has to take two pills every day. One looks like Truvada, the other like Descovy. But one of the two pills is a placebo. So Milan will only find out which medication he is actually taking at the end of the trial. Does this matter to him?
"Not at all. We've been told that both drugs offer effective protection. As long as I'm protected, I don't need to be worried."
"I was aware that this was a turning point in my life."
And then the time had come. Milan no longer questioned his decision in favour of PrEP. No flinching, no hesitation, no uncertainty.
"Of course it was clear that I would take it, after all I had been waiting for it for over a year. But it was definitely a special moment. I was aware that this was a turning point in my life. I will now take two tablets every day for perhaps several years and have the medication in my body."
It is important that the medication is taken at the same time if possible. Milan's pill time is every day at 6 p.m., and apart from once on holiday, it has always worked so far.
Physical side effects: none
And what about the side effects? After all, these are at the centre of interest in the DISCOVER PrEP study.
Milan doesn't really know how to answer this question. He hasn't had any physical problems such as those listed in the package leaflet for Truvada - diarrhoea, nausea and vomiting, skin rash and itching. Not even before, when he was taking Truvada as part of the PEP.
"But I felt a bit depressed for the first two weeks. I can't say whether it was because of the tablets. Maybe I was just in a bad mood?".
After two weeks, says Milan, this phase was already over and after 14 days of taking the tablets regularly he was officially protected.
Sex without psychological stress and the regret afterwards
Until then, I had to promise my doctor that I wouldn't have sex without a condom. But I didn't feel like having sex at the time anyway, with or without. So the timing was perfect," says Milan. "We went on holiday straight afterwards: to Tel Aviv for Gay Pride."
From now on, sex was possible without a condom, without the fear of having exposed yourself to an HIV risk. Without the psychological stress and regret afterwards.
"It gives you something, but it also takes something away from you."
And what was it like to finally reach your destination? Milan is silent, searching for the right words and then, contrary to expectations, becomes very serious. "It gives you something, but it also takes something away from you".
He tries to explain: "I can now have as much sex as I want without having to think about it, and that's what I do now. Without a guilty conscience. My sex life has been wilder since then, but on the other hand I feel that I'm no longer easily satisfied. I see myself as quite picky and spoilt, not to say arrogant."
Learning to deal with PrEP freedom
He can't really explain this development, he can only surmise "I believe that the freedom that PrEP gives me has brought me to this point. However, this is not the fault of PrEP, but rather my own inability to deal with this freedom. PrEP is just a tool and you have to learn how to use it. And that involves more than just taking the tablets regularly."
Milan was not surprised that PrEP and the associated opportunities for sexual experience would have a lasting effect. In fact, this was one of the reasons why he wanted to take part in the study.
"I'm curious to see what it does to me."
"I wanted to have sex without a condom, without the fear of the lifelong consequences of an HIV infection. And I wanted to experience first-hand what it's like for HIV-positive people to have to take tablets every day. I am curious to see what these sexual experiences will do to me. Whether this time on PrEP will help me in my personal development, whether my attitude to life and my attitude to sexuality will change."
Hope for change
Milan is not only curious about this, he is also hoping for these changes. At the moment, sexuality is taking up a lot of space in his life, he says openly. Even more than he would actually like.
"Actually, I don't always just want to deal with sex, I want to concentrate on more serious things. Some people will certainly laugh about it, and maybe I'm just naive. Let's see how I feel about it in maybe a year's time."
But for now, Milan is making the most of his new sexual freedom. He is hardly ever online anymore. "Going to a sex club is much more effective," jokes Milan. "I don't want to waste so much time chatting to get laid."
Regular check-ups
Milan has to attend a check-up at regular intervals as part of the study. On the one hand, he is tested for HIV and other sexually transmitted diseases. He is also checked to see if there are any noticeable changes in his kidney values and bone density - both of which are possible side effects of PrEP. Milan has now even experienced close friends having to discontinue treatment because they were unable to tolerate the medication.
"I hope I don't have to stop the study."
Milan's next visit to the practice isn't actually for another four weeks, but now he's due to come in earlier. The results of the last check-up are available and there is something to clarify. Milan doesn't know what this means.
Has he caught something and needs treatment? Or have he been diagnosed with lasting side effects from the medication? "I just hope that I don't have to stop the trial because of this," says Milan. "But I don't want to drive myself crazy unnecessarily. It won't be anything bad."
Further articles on the topic:
"Pills to protect against HIV: DISCOVER study now also in Germany" (magazin.hiv, 10.4.2017)
Interview: "My sex has been much more relaxed since I started taking PrEP" (IWWIT blog, 3 July 2017)
"PrEP? We don't do that here!" (magazin.hiv, 1 Aug. 2017)
