The Before Pill
Previous preventative measures – such as condom use during sex – have not been sufficient to stop the spread of HIV and AIDS. PrEP is a new medical option for HIV/AIDS prevention in the form of a pill. People at a greater risk of HIV infection now have additional options for effectively protecting themselves.
This guide 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?
- How exactly does PrEP work?
- Which PrEP meds are available?
- How safe is PrEP?
- How is PrEP taken?
- Side effects, interactions
- Health insurance, private payment or online delivery?
- What are the pros and cons of PrEP?
- What happens if I unknowingly have HIV and take PrEP?
- Who needs PrEP?
- Where does this information come from?
- Where can I find more information?
- Count on LoveLazers!
WHAT IS PrEP?
PrEP is the use of anti-viral agents to prevent an HIV infection. 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 and after any risk contact. PrEP is a combination of the same active agents that people with HIV take as a treatment.
Currently in Germany, a number of different medications are approved as PrEP. They combine two agents in one caplet and rarely cause relevant side effects.
PrEP is neither a morning after pill, a vaccination against HIV or a cure. It should not be mistaken for post-exposure prophylaxis (PEP), which is taken after unprotected contact in order to prevent an infection.
In Germany, the costs for PrEP have been covered by public health insurance since September 2019. According to the RKI, between 30,000 and 32,000 people in Germany are already using PrEP (as of the end of 2022) – and rising. In order for this number to increase, access to PrEP must become even easier. PrEP is an important building block to end the HIV epidemic altogether. Let’s continue to demand it together!
One can take PrEP on a regular basis (daily) or for a few days (before and after the sex). See below for precise instructions. Studies have proven: PrEP is effective. However, the following applies for all ways to take PrEP: every pill you forget reduces your protection.
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 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) Generics are much cheaper and are thus prescribed.
The drug Descovy® is also suitable for PrEP, but is usually not covered by health insurance.
HOW SAFE IS PrEP?
In control trials, PrEP has been proven to be as least as effective as correct condom use or ‘treatment as prevention’ (non-infectivity through effective HIV treatment). For high protection, make sure you take the pills correctly!
Some people worry about possible resistances: While infection with drug-resistant HIV under PrEP is possible in principle, it is extremely unlikely. To date, fewer than 20 infections have been attributed to resistances – out of more than one million PrEP users worldwide.And no safer sex method can guarantee complete protection against HIV.
(see ‘HIV-Report’, 2016 Nr.5, Page 6)
Important to know about PrEP: Every forgotten dose reduces the amount of it in your system and lowers its protection.
HOW TO TAKE PrEP?
PrEP is taken as a tablet FTC/TDF once a day (every 24h). People use PrEP over different periods of time: some only for the sex party on the weekend, others take it over a period of weeks, months or years. It is up to you how long you take PrEP. You just need to know how to start and end taking it. This depends on your bodily condition:
Fronthole/vaginal sex: You take one tablet a day (every 24 hours) for 7 days before sex.
Anal sex: You take one tablet a day (every 24 hours) for two days before sex.
“Kick-Start”: For anal sex you also have the option to take two tablets 2-24h before sex. Starting only 2h before sex is a bit short. Better take the starting dosage more ahead of time.
Fronthole/vaginal sex: You take one tablet a day (every 24h) for 7 days after the last risk contact.
Anal sex: You take one tablet a day (every 24h) for two days after the last risk contact.
Note: For people who have undergone gender reassignment surgery and/or hormone therapy, it is recommended to start PrEP 7 days before sex and take it until 7 days after the last risk contact – due to a lack of study evidence.
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.You should also 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 indicator of how well your kidneys are functioning (see Side Effects below).
You should get tested for other sexually transmitted infections (STIs) at the same time. If you take FTC/TDF (Truvada® and generics) 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. However, only you will be able to find the right variation that works best for you.
What exactly is Daily PrEP, what is On-demand PrEP?
These are simply different names for the above-mentioned forms of intake. Daily means taking a PrEP tablet permanently and regularly (every day). “On demand” means that you only take PrEP when you expect a situation in which a risk is likely. Above you can see how exactly.
SIDE EFFECTS, INTERACTIONS
When FTC/TDF (Truvada® etc.) 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 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 leaflet.
There are no known interactions with hormone therapy.
Neither do alcohol and other drugs limit the effectiveness of PrEP. However, consuming them simultaneously can put further strain on your metabolism, liver and kidneys.
Do not take PrEP together with digestive supplements such as laxatives or fibres (psyllium husks, flaxseed or fibre capsules). Your body may not sufficiently absorb the active agents. It is recommended to take the supplements 2-3 hours before or after taking PrEP.
HIV can be transmitted more easily in the presence of an STI. PrEP also effectively inhibits the transmission of HIV in this case.
The drug combination FTC/TDF has been used in HIV therapy since 2004 and as PrEP since 2012. Long-term effects are virtually non-existent.
PrEP FROM HEALTH INSURANCE, PRIVATE PAYMENT OR ONLINE DELIVERY?
Since September 2019, the costs for PrEP have been covered by the statutory health insurance funds in Germany.Therefore it is best to go to a medical practice or health clinic, and make it clear that you need PrEP because you are in a group that is at higher risk for contracting HIV. You are considered at higher risk, if you belong to a group in which HIV infections are more prevalent (for example: Men, who have sex with men, trans people, sexworkers, or straight people with partners who are positive, but untreated.)
If you are not insured with a public health insurance, you can buy PrEP on a private prescription (PRIVATREZEPT) for 40-70EUR for a monthly pack at the pharmacy. Or you can order it on the Internet. For the German market, a price overview is available here
Buying PrEP online (for England): https://prepster.info/buying-prep-online/
In Switzerland and Austria, the only option is to pay for PrEP privately (as of early 2023).
Some people order generics from certain online pharmacies Here you can get a three-month package for the equivalent of 50-80EUR including shipping.
When health insurance won’t cover the cost, generics for others can be purchased cheaply from abroad, prescribed PEP can be taken as PrEP, or pills can be purchased from acquaintances. 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.
Often, there are ways to cover the cost for the lab tests (ask your doctor). Your local Checkpoints (Health centers for queer people) can also offer their help and services.
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 sufficiently treated for HIV, and the virus may not be kept at undetectable levels(currently the measurement for a successful HIV treatment). Taking FTC/TDF (Truvada® and its generics), 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 – preferably 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.
WHERE DOES THIS INFORMATION COME FROM?
The large European studies, the PROUD study in England and the IPERGAY as well as PREVENIR studies in France, provided us with the first important findings. For the situation in Germany, we refer to the EvE-PrEP study of the Robert Koch Institute. You find further information in our link list. We have also collected info about PrEP from specialist events and we have consulted other physicians and pharmacists. 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):
- Contact your nearest HIV practice
www.hivandmore.de/aerzteverzeichnis/ (for Germany and Austria)
https://aids.ch/de/adresssuche/ (for Switzerland)
- Mancheck in Berlin
+49 30 44668870
- Checkpoint in Zurich
+41 44 455 59 10
- PROUD study www.proud.mrc.ac.uk
- IPERGAY study www.anrs.fr/en/presse/communiques-de-presse/326/high-efficacy-demand-pre-exposure-prophylaxis-confirmed-final & www.cdc.gov/nchhstp/newsroom/2015/croi-media-statement.html
- iPrEX study https://www.nejm.org/doi/full/10.1056/nejmoa1011205
- RKI EvE-PrEP study https://www.rki.de/DE/Content/InfAZ/H/HIVAIDS/Abschlussbericht_EvE-PrEP.pdf
- PREVENIER study https://www.poz.com/article/ondemand-prep-works-daily-pills & https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(22)00133-3/fulltex
- PrEP resistance https://www.aidsmap.com/about-hiv/prep-failures-breakthrough-infections
This leaflet/guide text is subject to constant professional and medical quality control. → LOVE LAZERS ADVISORY BOARD
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: email@example.com
© LoveLazers, 2017-2019. This online information is updated regularly. 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.