Version for Europe – July 2018. Updated March 2019.
Previous preventative measures – such as condom use during sex – have not been sufficient to stop the spread of HIV and AIDS. PrEP, a new medical option for HIV/AIDS prevention in the form of a pill, will hopefully be available for everyone sometime soon. People at a greater risk of HIV infection now have additional options for effectively protecting themselves.
This flyer aims to help you decide whether PrEP is the right choice for you and which form is best. It’s been specifically written for men who have sex with men (including inter, trans*, bi, cis, pan, gay, hetero, queer or other) and for all who are interested in the topic. It’s been written with the belief that everyone – who needs or wants PrEP – must have access to it as quickly as possible.
WHAT IS PrEP?
PrEP is the use of anti-viral agents to prevent an HIV infection (only the HIV-1 subtype, which is by and large the only kind that occurs in Europe and the USA). PrEP stands for:
Pre – before
Exposure – exposure to the HIV virus
Prophylaxis – prevention of infection
When using PrEP, substances are taken regularly or on a case-by-case basis before any potential sexual contact. This is a combination of the same substances that are taken during treatment for people with HIV. Currently in Germany, a number of different medications are permitted for PrEP. They combine two agents in one caplet and rarely cause relevant side effects.
PrEP is not a morning after pill, a vaccination against HIV or a cure. It should not be confused with post-exposure prophylaxis (PEP), which is taken after a situation in which unprotected contact occurs in order to attempt to prevent an infection.
In the United States, health agencies and some insurance companies have considered PrEP to be effective since 2012 and have advertised for it as such and covered its costs. In Germany as well, a small and growing group of people have started using PrEP. At the same time, general knowledge of it is not widespread. PrEP will most certainly be used more intensely – with or without covered costs – by individuals to protect themselves from HIV infection and both with or without condoms.
PrEP can be taken regularly (daily) or for just a few days. Studies have shown that both methods are effective. You are best protected if you take PrEP every 24 hours. A planned, short-term use before potentially risky situations, like special weekends, can also be a practical and affordable form of protection. For both kinds of PrEP, it’s important to remember that for every dose you forget, the protection is reduced!
HOW EXACTLY DOES PrEP WORK?
For the HI virus (HIV) to reproduce in the body, it must constantly replicate its genetic material (RNA) in the genetic material of human cells (DNA). The virus must first rewrite its genetic information in human form to do that. That’s done with a tool that HIV brings with it: the reverse transcriptase enzyme. The active agents in PrEP block this process by integrating false components into the DNA. This prevents the virus from reproducing. Because the active agents remain in the blood and anal mucosa along with other places for longer periods of time, the virus is no longer able to integrate its genetic information into human cells and disappears from the body, unsuccessful in its attempt to convert its genetic information into human DNA.
WHICH PrEP MEDS ARE AVAILABLE?
Tablets are currently available for PrEP, which combine the active ingredients emtricitabine FTC and tenofovir TDF, in short: FTC/TDF.
These are Truvada® (Gilead is the manufacturer) and its generics (medication with the same active ingredients). Of these, Emtricitabin/Tenofovirdisoproxil HEXAL® and Emtricitabin/Tenofovirdisoproxil-ratiopharm® are approved in Germany.
Whether the Truvada® successor Descovy® is more suitable for PrEP than the FTC/TDF combination is currently being researched.
HOW SAFE IS PrEP?
Long-term – meaning daily – and consistent use of PrEP has been proven in studies to be as least as effective as correct condom use or ‘treatment as prevention‘ (non-infectivity through effective HIV treatment). Different use regimens of short-term PrEP – with increments – can also offer a high level of protection. As a rule of thumb for short-term PrEP: the more days you regularly take medication for short-term PrEP before having sex, the better the protection will be. Beginning four to five days ahead of time can be calculated to have the same level of protection as a long-term PrEP regimen. (see ‘HIV-Report’, 2016 Nr.5, Page 6)
When taking the medication only before a risky situation, this may not be the case, but still considerably reduces the transmission of HIV. But you may not feel that that’s enough protection. If you don’t use condoms (all the time), it’s still a better option than no protection against HIV at all. In addition, infections with HIV are possible if the virus is resistant to substances in PrEP, but extremely unlikely. There are only four documented cases of infection worldwide, only two of which are attributed to resistance. And no safer sex method can guarantee complete protection from HIV.
What’s important for PrEP is to know that every forgotten dose reduces the amount of it in your system and lowers its protection.
HOW IS PrEP TAKEN?
The manufacturer of Truvada® recommends the following for long-term use as PrEP (applies to the generics, too). Take one pill at the same time daily:
For short-term PrEP, participants of the IPERGAY study took two pills between 2-24 hours before potentially being exposed to HIV, and then one pill every 24 hours for up to two days after:
Dosage recommendation for Truvada®, short-term, IPERGAY study
(applies for anal and not for vaginal mucosal membranes.)
The ‘quick-start’ from IPERGAY is controversial. Whether taking two tablets directly before sex is sufficient or not is yet to be proven. But what’s certain is that the earlier you begin to take PrEP before having sex, the better the protective effect will be. Ideally, you should start taking PrEP a few days beforehand.
Before starting PrEP, you must be sure that you’re not already infected with HIV. You must also be checked for a Hepatitis B infection to avoid any possible complications. It is also a good idea to have your blood levels checked beforehand and then again every three months after starting treatment. The creatinine levels in your blood are the most important to pay attention to because they indicate how well your kidneys are functioning (see Side Effects below). You should have yourself tested for other sexually transmitted infections (STIs) at the same time. If you take FTC/TDF during meals, you can increase the intake of contained tenofovir in your body by about a third.
Once again: Taking the medication regularly is the decisive factor in its effectiveness! Taking it daily will likely be the most practical and effective form of PrEP. Only you will be able to find the right variation that works best for you.
SIDE EFFECTS, INTERACTIONS
When FTC/TDF is taken for PrEP, it may cause nausea, fatigue and headache. When its use is discontinued, any side effects experienced will completely disappear over time. In rare cases, FTC/TDF (Truvada® etc.) can reduce bone density or cause kidney damage. You should never take it without consulting a doctor, especially if you have a history of kidney problems.
Additionally, the lactose contained in the medication may also cause a problem for those with lactose intolerance. You can learn about interactions with other medications by consulting a doctor, or from the package lea et. FTC/TDF cannot be taken in combination with adefovir dipivoxil (Hepsera®).
Alcohol and other drugs do not limit the effectiveness of PrEP. However, consuming them simultaneously can put further strain on your metabolism, liver and kidneys.
There are claims that HIV can be more easily transmitted when another STI is already present. PrEP also effectively inhibits the transmission of HIV in this case.
PrEP‘S STATUS IN GERMANY
Status as of March 2019
Since October 2017, emtricitabin/tenofovirdisoproxil produced by Hexal can be purchased in Germany for 40EUR for 28 tablets in certain pharmacies (within a pilot project).
This requires a private prescription from an HIV outreach clinic or other practitioners participating in the programme. They must be prepared to carry out regular blood and urine tests, i.e. the initial HIV test, counselling and education.
PrEP produced by Ratiopharm in contrast costs 70EUR (plus ‘Duomevolen’ by Amneal – 50EUR and ‘Emtenovo’ by TAD Pharma – 60EUR/35 tablets) and can be prescribed by any doctor (also from EU, CH and Norway).
The costs for PrEP are currently not covered by the health insurance fund. At least for accompanying measures however, a method of covering the costs can often be found (ask your doctor). Some checkpoints (health centres for gay and other men) offer the accompanying measures themselves.
IS IT POSSIBLE TO GET PrEP CHEAPER?
Despite Hexal‘s now lower prices, 650EUR (if taken daily) per year could be incurred just for the medication. You can save more than half of this if you bring PrEP back with you from your travels to non-EU countries (pills for up to 3 months are permitted for personal requirements).
Some people order generics from certain online pharmacies (e. g. from Thailand or Swaziland). Here you can get a three-month package for the equivalent of 90EUR including shipping. This import is still notably cheaper than Hexal’s PrEP.
However, because of import regulations, shipments sent directly to Germany are often confiscated by customs. As far as we know, sending a shipment to a residential address in the UK and then having it sent to a German address can be done without further complication. In Switzerland, on the other hand, a monthly amount is permitted and can be obtained directly online.
We’ve collected some information about ordering online and have published it (in German). Also, consider reading our text How to Get PrEP From Germany to EU + Non-EU Countries.
In addition, generics for others are brought cheaply from abroad, prescribed PEP is taken as PrEP or pills are purchased from acquaintances. This creative procurement is an expression of the fact that PrEP simply is not affordable for everyone. Organising PrEP on your own could be risky (because a prescription is not always required) because of missing out on medical supervision and regular testing. However, we consider this to be essential when taking PrEP.
WHAT ARE THE PROS AND CONS OF PrEP?
If you’re thinking about starting PrEP, then you are making a decision for yourself. PrEP only works correctly if you take it regularly. Condoms also only work if you choose to use them. What’s certain is that condoms don’t work at all if you forget to use them. If you forget to take your PrEP for a day, the protection is not completely gone, although it is reduced.
Condom use may be neglected while under the influence of alcohol, other drugs or if you’re just lost in a moment of love, but the PrEP that was taken when you were sober still works!
Unlike condoms, PrEP offers no protection against other STIs. However, condoms (during oral intercourse or other contact with bodily fluids) don’t offer complete protection against STIs either. PrEP is also a good method for people who don’t use condoms or who use them irregularly or incorrectly, and therefore may not be protected from other STIs anyway. An important advantage of a regular PrEP treatment is that during the necessary regular lab test (every three months) you can also be tested for any other STIs (which doesn’t always happen automatically). That way they can be detected and treated early.
The same applies to Hepatitis C. Based on our current knowledge, this infection is generally passed on through more extreme sexual practices (for instance, if there’s blood). Anyone who wants to be safer about this needs special safer sex rules – PrEP or condom use are not sufficient.
PrEP gives you the control over your protection against HIV because you’re the one who must use the pills correctly. Talking about safer sex is still very important. You may have had a hard time addressing the topic of safe sex in the past and ended up taking risks without proper protection. Trying PrEP may allow you to have more enjoyable sex without feelings of fear and guilt afterwards. This kind of psychological relief may allow you to speak more openly about protection from HIV and other STIs. It may even make certain situations with condoms less stressful!
The different options for safer sex shouldn’t be in competition with one another. They can be combined and in many situations, just one method is enough.
There’s no reason, whether political, financial, or otherwise, to prevent people from deciding to use PrEP and taking control of their health and well-being. For that reason, many institutions have recommended introducing PrEP to the EU, such as the WHO World Health Organization, the ECDC European Center for Disease Prevention and Control, the association of German HIV specialists (dagnä) and the national German AIDS organization (Deutsche Aids-Hilfe), just to name a few.
WHAT HAPPENS IF I UNKNOWINGLY HAVE HIV AND TAKE PrEP?
If you’re HIV positive and take PrEP, you’re not getting all you need to successfully treat HIV, as the virus may not be kept at undetectable levels (currently the measurement for a successful HIV treatment). Taking FTC/TDF (e.g. Truvada®), which combines two active agents, is sufficient for an effective PrEP, but an HIV treatment requires additional medication. That’s why having an HIV test is absolutely necessary before starting PrEP! That means a dependable (and anonymous) test at a healthcare institute or a community testing station. A rapid test is not sufficient.
It’s also possible that resistance to medicine used for PrEP may form, though this has not been frequently observed in studies. FTC/TDF is not associated with this sort of resistance. However, this is not relevant for people who are HIV negative because no virus is present that could form a resistance.
WHO NEEDS PrEP?
PrEP is recommended for people who are at a high risk for HIV infection. Only you can answer the question of whether or not you belong to this group. If you can’t or don’t want to use condoms, if you’ve had an STI in the last year or an anal STI, if you find the topic of safe sex scary or hard to talk about, or if you’ve found yourself doing things during sex under the influence of drugs that you wouldn’t otherwise do, then PrEP is a good option for you to consider. In the end, that question is personal and can only be answered by you: Simply wanting to have more fun and enjoyment during sex – without a condom – is a legitimate enough reason to decide to start taking PrEP. All people should have the right to expand their possibilities for their personal freedom.
Thanks to PrEP, new infections in the United States have dropped dramatically. And because PrEP is such an important building block for truly ending the HIV crisis, we’re demanding that costs are covered immediately by the health authorities! And for everyone that needs it – without co-payments and for those who don’t have health insurance. A two-class prevention scheme, in which PrEP is not available for the poor must soon be a thing of the past.
WHERE DOES THIS INFORMATION COME FROM?
The two large European studies, the PROUD study based in England and the IPERGAY study based in France, provided us with the first important findings. You can read more about that in our link list. We have also collected info about PrEP from the Internet and events. We’ve had intense discussions about what this new information means for our lives and future. We believe that it’s so important that we have made it available for anyone – in particular those who are at a high risk of HIV infection.
WHERE CAN I FIND MORE INFORMATION?
and in German:
and the pdf ‘PrEP 2017 – Effectiveness & Availability’ at hivreport.de and information about the PROUD, IPERGAY and IPREX studies on the Internet.
If you wanna talk with someone about PrEP (in English, too):
- Mancheck in Berlin
+49 30 44668870
- Checkpoint in Zurich
+41 44 455 59 10
COUNT ON LOVELAZERS!
Love Lazers was formed in late 2015. Currently, it consists of eight activists in Berlin, Zürich and Leipzig. We focus our efforts on cyber- and nightlife. Some of us are in gay, discordant relationships (HIV+ and -) and have been educated in the fields of sociology, medicine and law. Some of us have worked for a long time in the areas of prevention and drug information. We’re growing our network slowly and are independent of any specific institutions. If you are interested, you can join us: firstname.lastname@example.org
© LoveLazers, December 2017. Third, updated edition 2018. We do not assume any liability for accuracy or completeness.
Translation by Brenton and Robert.
Thanks for comments, help and impulses: Koenraad, Renate, Sandra, Tibor, Ivanka, Philipp, Dario, Barbara, Jérémy, Mancheck, Armin, Nick, Sven, Frenky und Sheena. Supported by: mikrodisko boombox, ://about blank, Dr. Gay Schweiz, Tuntenhaushoffest, les amies du futur and: man check
Model: Patsy with a PrEP pill. Photo: Whit Forrester 2016.