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Pre Exposure Prophylaxis (PrEP)

PrEP (Pre Exposure Prophylaxis) is the use of medication to prevent HIV. By taking PrEP, people who are HIV-negative (meaning they do not have HIV) can reduce the chance of getting HIV by up to 99%. Right now, only one medication can be used as PrEP: Truvada.

Truvada is a medication that has been used to treat HIV for many years. In 2009, a large study showed that not only was it effective at treating HIV, but also at preventing HIV when taken every day.  Since then, several studies have confirmed that it is incredibly effective at preventing HIV.

1. Who is PrEP for?
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PrEP is for HIV-negative people who may be at risk of HIV. The level of risk is different for every person, but people who are at highest risk are men who have sex with men, injection drug users, and transgender people. Women can also be at high risk if they or any of their sexual partners are injection drug users, or if any of their sexual partners are men who have sex with men.

Many other factors can affect your personal risk, including:

  • Whether and how often you use condoms
  • Whether you know the HIV status of your sexual partners
  • Whether your HIV-positive partners are undetectable (see question 9)
  • How many sexual partners you have
  • The types of sex you have (anal, vaginal, oral, etc.)
  • If you’re a man who has sex with men, whether you’re top or bottom or versatile
  • If you inject drugs, whether you share needles
  • Whether you use recreational drugs, and if so, how often

2. Is PrEP right for me?
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Whether PrEP is right for you depends on your individual circumstances, and your risk of being exposed to HIV. In figuring out whether you should go on PrEP, you should ask yourself the following questions:

  • Are you a man who has sex with other men?
  • Do you use condoms only sometimes or not at all?
  • Do you often get STIs?
  • Have you ever taken PEP (post-exposure prophylaxis)?
  • Do you have multiple sex-partners?
  • Do you have sex while using party drugs like ice, MDMA, or G?
  • Do you get anxiety about HIV or STIs?

For example, if you are a gay man who has multiple sex partners and you don’t always use condoms, PrEP is a very good idea for you. Even if your risk is relatively low, you might want to consider PrEP as a supplementary or an extra prevention tool.

3. How does PrEP work?
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PrEP works by stopping HIV from duplicating inside the body. Without the ability to duplicate, the virus eventually dies off, and can no longer infect you.

Normally when a person is exposed to HIV, the virus attaches to immune cells and uses them to make more HIV. The newly made HIV then spreads and attaches to more immune cells, ultimately damaging the immune cells until they can no longer fight off illnesses and infections. PrEP stops this process before it starts, preventing HIV from making more copies of itself, and preventing HIV infection.

In order to be effective, there has to be enough Truvada (the drug used as PrEP) in your body to prevent HIV. If there isn’t enough Truvada in your body, then there’s a chance you could be infected. This is why it’s important to take PrEP every day. This ensures high levels of Truvada in your body, providing maximum protection from the virus.

4. Is PrEP effective?
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PrEP is the most effective HIV prevention tool by far. When taken daily, PrEP is up to 99% effective at preventing HIV. By comparison, condoms are approximately 70% effective at preventing HIV when used all the time.

Many different figures have been thrown around about how effective PrEP is. When we say something is effective to a certain percentage, it means that out of all the times it’s been used that it worked that percentage of the time.

Some have heard 42%, some have heard 86% or 92%. The reason for these different figures is because a drug’s effectivenessis a measure of how successful it might be in real world circumstances. This takes into account things like missed doses, interactions with other medications a person might be taking, or other illnesses that might be present.

 

When we say PrEP is 99% effective, that means that when PrEP is taken every day as prescribed, it prevents 99% of the cases of HIV that would have occurred otherwise. If doses are missed, however, then PrEP is not as effective.

5. What are the side effects?
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PrEP has very few side effects, and very few people ever experience them. The most common side effects were headache, nausea, unintentional weight loss, and depression. Some people experience sleeplessness,while others may experience fatigue. In almost all cases, these were very mild and for most people they disappeared just a few weeks after starting PrEP. Most people don’t have any side effects at all.

In a handful of people, Truvada may lead to a loss of bone mineral density, or a decrease in kidney function. These side effects aren’t problematic in and of themselves, but it is important to visit your PrEP doctor every three months to keep track of them if they pop up.

6. Are there any long-term side effects?
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There are no known common long-term side effects from taking Truvada as PrEP. In a handful of people, Truvada may lead to a loss of bone mineral density, or a decrease in kidney function. Most of the side effects that people ever experience (like nausea and headaches) disappear within a few weeks of starting it.

Truvada has been around since 2004, and used to treat HIV in HIV-positive people. In very rare cases, people on Truvada have experienced a build-up of lactic acid in the bloodstream, and sometimes developed serious liver problems. These side effects were very rare, and were in part caused by the underlying HIV infection in the people who experienced them. An HIV-negative person is unlikely to develop such side effects while taking Truvada, even over the long-term.

7. What should I do if I experience any side effects?
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If you’ve just started PrEP and you’re noticing any symptoms out of the ordinary (like nausea, headache, or diarrhoea), you probably just need to wait a few weeks. Such side effects aren’t unheard of, but they almost always go away on their own. Essentially they’re just signs that your body is getting used to the medication.

That said, it’s important to pay attention to them, how severe they are, and how long they last. If you experience side effects that are particularly serious, or last longer than 3-4 weeks, you should contact your doctor for further advice.

8. Why don’t people just use condoms?
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There are a number of reasons people can’t, don’t, or won’t use condoms. Ultimately the decision whether or not to use condoms is a very personal one, and depends on each person’s particular circumstances. Instead of focusing on what other people do – or what you think they should do – it’s best to focus on your own individual sexual practices. Informing yourself about your own personal risk and the different ways you can reduce that risk will help you make decisions that improve your own wellbeing.

9. What if I only have sex with HIV-negative people?
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For some HIV-negative people, the simplest way of avoiding HIV would be to have sex only with other HIV-negative people. This practice, known as serosorting, is only somewhat effective, and is one of the least reliable HIV prevention strategies. The main drawback of serosorting is that a large proportion of people don’t know their HIV status. In Australia, An estimated 10-20% of people living with HIV are unaware they have the virus. Simply assuming a person is negative, or relying on their belief that they are negative is not a safe prevention strategy.

Serosorting does not make sense especially given what we now know about treatment as prevention (TasP) and undetectable viral load. We’ve long known that HIV-positive people on treatment can reach undetectable viral load, meaning the amount of virus in their body is so low that current tests can’t detect it. What scientists have recently discovered is that people who are undetectable are all but incapable of passing on the virus. In other words, it’s safer to have condomless sex with an HIV-positive undetectable person than it is with a person who thinks they are negative.

10. What happens if I miss a dose?
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It’s important to take PrEP every day, and you should try to never miss a dose. If you accidentally forget to take it, though, take it as soon as you possibly can. However, if you’re close to taking your next regular dose, it’s fine to wait until then to pick up where you left off. If this happens, take only one pill as prescribed. Taking two pills to make up for the missed dose, or double dosing, isn’t necessary as it doesn’t give you any added benefits.

11. What’s the difference between PrEP and PEP?
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Where PrEP is taken before you’re potentially exposed to HIV, PEP is taken after a suspected exposure. PEP stands for post-exposure prophylaxis, and is taken only if someone thinks they have already been exposed to HIV, either through sex without condoms, injection drug use, or needlestick injury. PEP must be started within 72 hours of the exposure, and is taken for 28 days.

12. Does PrEP prevent other STIs?
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PrEP does not prevent any STIs other than HIV. The best way to prevent other STIs is by going in for regular sexual health checks at least every three months and by using condoms.

13. Do I still need to use condoms if I’m taking PrEP?
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Because PrEP does not prevent or protect against other STIs, condoms are still a very good idea.  When used properly and regularly condoms are the most effective method for preventing STIs like gonorrhoea, chlamydia, syphilis, hepatitis, and herpes.

14. How do I get PrEP?
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Right now, the best way to get PrEP in Victoria is by taking part in PrEPX study. The PrEPX study will provide low-cost PrEP to up to 2600 people in Victoria over the next couple years.

Availabilities are limited. To enrol to the trial or enquire about the waiting list go to Alfred Health's website, or e-mail prepx@alfred.org.au

If you’re unable to participate in the study, or prefer to import PrEP yourself, you can also visit PrEPaccessNOW. PrEPaccessNOW is a group of community activists who have taken the hard work out of accessing PrEP from overseas, and provides step-by-step instructions for getting a prescription and importing it. 

It’s possible to get PrEP directly from Australian pharmacies, but because it is not yet subsidised by the government, the cost (almost $800 per month) makes it out of reach for most people.

15. How much does PrEP cost?
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The cost of PrEP depends on where you get it. The cheapest way to get it is by enrolling in one of the clinical studies. These studies are operating in Victoria, New South Wales, the ACT, South Australia and Queensland, and provide PrEP either free of charge or for a small co-pay for a three month supply.

When buying from an online pharmacy, the cost ranges from about $130 - $350 for a three month supply, depending on which pharmacy you use and which generic you choose. Community activists have set up a group called PrEPaccessNOW to help you buy PrEP from online pharmacies. If can’t afford the cost of buying online, one of the pharmacies has made a deal with PrEPaccessNOW to provide subsidies for some people. For more information, please visit their website at pan.org.au.

You can also get PrEP from local pharmacies, but because it is not yet subsidised by the Commonwealth, it costs over $2000 for a three month supply.

16. What’s the difference between the generic and name brand drugs used for PrEP?
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There is no difference between name-brand Truvada and its generic versions other than their manufacturer. Both contain the same ingredients and both are effective at preventing HIV.

Truvada, the drug used as PrEP, is manufactured by Gilead Sciences. Gilead has given permission to other companies in India and South Africa to manufacture generic versions, but with the exact same composition, mainly so they can provide affordable and low cost drugs to the people living there. These generics have been tested for safety and effectiveness by several agencies, including the US Food and Drug Administration, the World Health Organisation, and the South African Medicines Control Council.

17. How do I talk to my doctor about PrEP?
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Talking to a doctor about PrEP might be very difficult. Because PrEP is such a new prevention tool many doctors may not be aware of it. Also, talking to your doctor about your sex life isn’t always easy, and may bring up some uncomfortable topics. It’s important to remember that your doctor’s job is to provide you with the best possible care. It’s best to simply be honest: tell them you believe you are at risk for HIV, and that you believe PrEP would be a great way to help you prevent HIV. They may ask you questions about many things discussed here: your overall health, your knowledge of HIV and PrEP, your sexual practices, and other potential risk factors.

If your doctor is unfamiliar with PrEP, it may help to refer them to the current Australian guidelines for it, provided by ASHM. There is also a section of the PrEPd for Change website that provides information on PrEP from the point of view of the client.

18. How often do I have go to the doctor? What will happen at my appointments?
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Your doctor will need to see you at least twice before prescribing you PrEP. During the first appointment you’ll talk about PrEP, its potential side effects, and how it might impact your overall health. The doctor will give you an HIV test, to confirm that you’re HIV negative, as PrEP is only for HIV-negative people. The doctor will also test your kidneys to help reduce the chance of any side effects.

At the second appointment the doctor will discuss your test results, and if you’re negative, provide you with a prescription for Truvada PrEP. They will also do HIV and STI tests a second time, just to be certain you are not HIV-positive.

After that, you will have to visit the doctor every three months to get a new prescription. The doctor will test you for HIV and STIs at every appointment, as well as asking you about any side effects you may be having.

If you decide to stop taking PrEP, your doctor will ask you to take it for an extra 28 days after the last time you had sex, just in case you were exposed to HIV.

19. What if my doctor doesn’t want to prescribe it?
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Many doctors still don’t know about PrEP, or may be uncomfortable with prescribing it. You can encourage them to look into it and consider changing their mind, but in the meantime it’s important to find a doctor who’s willing to prescribe it. You can ask your original GP for a referral to a doctor who does prescribe PrEP, or to an HIV specialist. You can also visit the website for PrEPaccessNOW. It lists doctors throughout Australia who will prescribe PrEP. You can also visit the Facebook pages for either PrEPaccessNOW or PrEPd for Change. These groups provide peer support for PrEP users, and often contain up-to-date information on where to access PrEP.

20. Why isn’t PrEP available through the PBS/Medicare?
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In order to be listed on the PBS, PrEP has to go through a number of government approval processes. Though it’s received the first approval it needs, it’s not yet clear if or when PrEP will be available on the PBS. Gilead, the company that makes Truvada for PrEP, is in the middle of getting the final approvals, and hopes to have a better idea of the timeframe in mid-2017.

You may have heard that in August 2016 the government rejected Gilead’s application to have PrEP put on the PBS. This does not mean PrEP is not effective. It also does not mean that PrEP will never be listed on the PBS. PBAC, the government body in charge of looking at applications for this sort of thing, said they know that PrEP is effective and that it will help prevent new cases of HIV in Australia. The application was rejected due to some inaccurate information that it contained, and also because Gilead was asking the government to pay too much money. Gilead has said they are going to submit another application in the near future, and that they will work with the government to find a fair price for PrEP.

21. What should I do when PrEP becomes available on the PBS?
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Once Truvada as PrEP is on the PBS, there will be a wait of several months before it is actually available. Once more details become available about how and when to access PrEP on the PBS, VAC and other groups will work to publicise those details.

22. Where can I go for more information or to talk to people who are on PrEP?
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Because there’s still a lot of confusion about PrEP, it may help to talk to others who are interested in it or already taking it. Fortunately, there are several groups that have sprung up in Victoria that can help answer some of your questions about PrEP, as well as providing information on how to get it.

PrEPd for Change provides extensive information about PrEP, including how it works, how to get it, and how to talk about the stigma and misconceptions a lot of people have about it. There’s also a section for prescribers to help them provide better information and care to people who want to get PrEP.

PrEPaccessNOW also provides information, and has set up an easy system for importing PrEP from overseas.

If you’re a trans guy who has sex with guys, the group PASH.tm provides extensive information about PrEP specifically for trans guys. They also have information about safer sex and HIV prevention on their website.

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