I’ve been taking actual HIV drugs for a month.
It doesn’t feel like something you should admit to publicly, does it? And that’s exactly why I decided to write about it. The stigma around HIV is so huge and baseless, I’m hoping to reduce it, even just a tiny bit. And hopefully to make some people aware that something like PEP even exists.
(Disclaimer: I’m neither a doctor, nor a scientist; this post is not a legit source, just a compilation of what I know from doctors, the Internet and from HIV+ friends)
What is it?
Let me start with that: HIV is not a death sentence. Actually, it’s not even hard to live with, not anymore. The medication got so much better over the last couple of years, that being HIV+ is basically a matter of taking two pills of antiretroviral therapy (ART) a day and getting regular check-ups. After half a year of this therapy your viral load should be so low, that you practically aren’t even infectious anymore.
You could also take this kind of drugs even if you’re negative, in order to prevent future infection. It’s called PrEP, a pre-exposure prophylaxis. You just swallow PrEP every day and it makes you way way less likely to get infected with the virus, even if you’re are exposed to it. Some countries pay for PrEP, but generally it’s a really expensive way to stay safer. Somewhere around half a thousand euros a month, from what I know...
If you’re not on PrEP and you got exposed to HIV, then you should get on PEP, a post-exposure prophylaxis. You take it for a month and it should reduce your chances of getting infected by around 80%.
It might have been the toughest part of my whole “adventure”. Getting over what happened. Accepting that accidents happen. That condoms sometimes break, that drunk and horny people usually don’t make the best choices. Understanding that you are entitled to some bad choices every once in a while. That making mistakes doesn’t necessarily mean you’re a bad person. Remember that.
The website of Deutsche AIDS Hilfe lists one of the emergency services near to my home as a “24h PEP spot”. I was there around 6 am. Turned out they had changed their schedule and now they open at 8 am. That was not a pleasant two hours of waiting, I must tell you... Afterwards they sampled my blood and I had to wait another two hours for the results. Just horrible.
Time is of the essence, since PEP taken more than 48h after potential infection is simply not effective anymore. Luckily it wasn’t the case for me – even with (some) sleep and the unexpected waiting, only 10 hours have passed between the intercourse and my first dose of PEP.
The blood they’ve analyzed told them that at the moment I’m not HIV+. And have no hepatitis, nothing that could interfere with PEP. It did however tell the doctor that my Hep B vaccination has worn off already, so I should receive a new one – I wouldn’t have known that if it weren’t for my little bareback accident.
The doctor then has to ask a couple of questions about what happened. Be honest and don’t try to hide anything. They need to assess, how high is the probability of infection and whether or not you should receive PEP at all. “High” still means only like 1%-5%, but it’s high enough to get the treatment. You might request it even if the probability is low, but then it’s pretty likely that your Krankenkasse will tell you to pay for it yourself.
I signed the papers, and the doctor gave me first three doses of PEP and a referral to another doctor (not emergency) that would prescribe me the rest. They also instructed me not to have any risky intercourses in the future (as if I was planning to) and not to donate blood for the next half a year (as if Germany allowed gay people to donate anyway).
So I went off to the other doctor. Waited until they opened at 12 am (good thing they’re open at all on Sundays!). Then waited another hour or two in the queue (because I had no appointment). The doctor basically just read the documentation from the emergency service and gave me a prescription. But most importantly – they calmed me down and explained that even if the treatment doesn’t work out, HIV is totally manageable nowadays. Oh, and they also gave me that Hep B vaccination.
I bought the prescription the very next day in a pharmacy recommended by the doctor, because only a few have such medications at all times, without waiting for a delivery.
In the pharmacy I paid 20€ for the medication that’s worth around 1600€. I actually signed a paper that I’m ready to pay the whole amount if my Krankenkasse decides they aren’t going to. They are obliged by law to cover the costs in case of a work-related accident, but are free to do whatever they want if the danger of infection was “patient’s own fault”.
They did cover the costs. From what I’ve heard most of them do, as long as the doctor says the probability is high, and not just hypochondria. Still, every time I checked my letterbox, I was getting a tiny heart attack, fearing that a medical bill might be there after all. I felt like an American, not a good feeling at all.
It hurt. The side effects hurt a lot. Diarrhea was not the end of the world, nausea was not that bad either. But the cramps in my stomach were just horrible. I was fine, fine, fine, but then suddenly a pain so strong came that I couldn’t move or think or a minute or two. The cycle looped every couple of minutes.
I couldn’t take anything against diarrhea or cramps, because mixing PEP with some other medications can be dangerous. I would’ve asked a doctor or a pharmacist for something different than what I had at home, which would not interfere with PEP, but...
The good news is, the side effects didn’t (and usually don’t) last longer than three or four days. And obviously they don’t affect everyone.
However painful, it was worth it.
PEP might damage your liver. To make sure it doesn’t, you should get your blood tested after a week of therapy. Then, after a month, they check your heart as well. I’m not sure why anymore, but why not?
Throughout that month you should take your pills regularly, every morning, every evening, without missing a single dose. If you ever do, PEP’s effectiveness falls drastically. That’s why I had reminders set up in my smartphone and kept the daily dose on me at all times, in case I’m not home when the reminder goes off.
The probability that the people I fucked with were HIV+ is quite low. The probability that they transferred the virus to me also wasn’t that big. PEP further lowered it – and really considerably.
But when you go get tested afterwards, in your head the probabilities don’t matter at all. The fact that HIV is not the end of the world and that you would have a pretty normal life regardless of the result – it doesn’t matter. You will get scared. You will panic, the waiting will ruin your day.
In my case it turned out I’m fine. Negative.
But I got a taste of what it’s like to be positive. It’s not as scary and painful and hopeless as it used to be years ago, when the medications were not as good as now. But it’s still scary, still burdened with stigma.
You can help with all of that. Support HIV+ people. Don’t stigmatise. Play safe. And test yourself every three months. Together, we can stop HIV!