A question about PrEP

What is PrEP? PrEP stands for Pre-Exposure Prophylaxis. The word “prophylaxis” means to prevent or control the spread of an infection or disease. The goal of PrEP is to prevent HIV infection from taking hold if you are exposed to the virus. This is done by taking one pill every day. 

These are some of the same medicines used to keep the virus under control in people who are already living with HIV (called Anti-retrovirals). PrEP is meant to be used consistently, as a pill taken every day, and to be used with other prevention options such as condoms.

In several studies of PrEP, the risk of getting HIV infection was much lower—up to 92% lower—for those who took the medicines consistently than for those who didn’t take the medicines.

Dear Alan. Right now, I’m still battling to get my head around the whole I am positive idea... I started seeing a guy a few weeks back, had amazing time together and connected amazingly...

Unfortunately, it seems there are still many people who are not educated about HIV, therefore when we eventually had the discussion around HIV... He ran miles... He does not know about it at all, nor what it means to be undetectable etc...

We have stayed in touch as friends subsequently and I have slowly but surely tried to educate him and talk to him about it and shared a few links with him through your support network however, he is still very scared and sticks to the "stigma" of the past...

I tried to explain to him around using PrEP as well, explaining the significantly reduced risks. But he is now so scared because and his words "I would never have thought you were HIV Positive"... And says he doesn’t want to be with anyone because he doesn’t know anymore. Hopefully in time I can educate him and in general people around the world will become a little bit more educated about HIV and the risks and how to mitigate these risks.  

The questions he asked me, for someone who is 31, were quite scary and clearly showing how little information and knowledge about HIV he has.

But, hopefully when I meet someone special one day and if they are Negative I will be able to have the skills to be better able to discuss the same issues any guidance would be greatly appreciated.

Dear M, thanks for your comments and indeed it is so sad that for over 34 years HIV continues to been an issue of humanity and although we have had to deal this yet still so much ignorance, shame, stigma and denial continues to exist. But before I was diagnosed HIV+ back in 1997 (18 years ago) I too was caught up in ignorance, intolerance and denial. Hence I will continue to remind myself of my own ignorance and denial not to mention my feelings of stigma and lack of knowledge towards those infected back then. This always helps me to remember that people only are interested in education about something when they feel the issue is of benefit to them or will affect them in some way. 

Sadly many simply remain like ostriches with their heads so deep in the sand and notion; "It is not my problem" that one can but only be compassionate and sympathetic at their attitude. It is a protection mechanism of sorts, “what I don't know about I don't have to deal with” mentality. Silly as it might sound perhaps but that the biggest barrier to HIV awareness.

I commend you on taking the stand to make a difference and if only all HIV+ individuals could do that we would be much further down the road to making a real change and getting people to realise that it can happen to anyone and nobody is immune to the HIV virus. If anything the very stance of "It cannot happen to me" is what places most people at highest risk.

Fear is a very real experience and unfortunately for far too long fear has been the only way HIV awareness has been used to no effect. It is simply human nature when presented with fear and no other alternatives but fear to shut down and fall into the trap of ignorance and denial. In 2015 we now have such a better position with so much more at our disposal. We can speak about real ways to prevent transmission such as PreP, and all other treatment as prevention methods (TaSP), condoms, water based lube, undetectable viral loads etc etc etc.

I’m assuming that somebody is going to take the lead in getting the PrEP conversation started. Here are some steps to kicking it off and keeping it moving forward: 

Start with a reminder: I love you. When you’re having a conversation about your relationship, start with reconfirming your foundation. After all, you’re together because you love each other. 

State your intention: This isn’t the time to be a wimp about why you’re starting this conversation. But that also doesn’t mean you’re here to lay down the law. So how about making it clear that this is a decision for you and your partner to make together? You might say something like: “I’ve been thinking about PrEP and what it might mean for us. I want to talk to you about your thoughts. Is that OK?” If your partner isn’t ready to have the discussion, you may need to drop it for now and bring it up again when he/she is ready.

Let your partner talk first: You might already be aware of your partner’s feelings about PrEP, or maybe not. Either way, give your partner a chance to express their opinion first. This approach can help your partner to feel like this really is a conversation and not only an opportunity for you to express your opinion or state the decision you have already made on your own. “I’m really interested to know what you think about PrEP.” 

Listen: Early and often. Conversations are an interchange between two people. You take turns talking and listening. So when your partner talks, really listen to what they’re saying — instead of thinking about what you want to say next and waiting for them to take a breath so you can jump in. If you aren’t feeling listened to, gently ask your partner to do the same. It might help to state what you just heard your partner say, in your own words, to make sure you understand: “So you are saying ______.” Listening is one of the best ways to honour another person.       

Offer to team up on getting informed: Make this an opportunity to look for information together. Share what you learn. Make a list of questions to get more information on. You might also want to meet as a couple with your doctor to talk about PrEP. To kick off the information-gathering: “How about if we get on the Internet and do some research? Where do you want to start?” 

Get to the why question: OK, here goes what might be the hard part. At some point in the discussion, you’re going to need to clearly state why you want to consider going on PrEP, why you want your partner to, or why you won’t. Since you kicked off the conversation, your partner will at some point ask you the “why” question. Again, this is no time for talking around the issue. “Here’s why I think PrEP would be a good idea for me/you/us.” Or, “here’s why I don’t think it’s a good idea.” And then state why. 

Keep listening: The conversation may go smoothly. Your partner may also have been thinking about PrEP and welcome the opportunity to talk about it. On the other hand, some elephants may have been wandering around your living room (one of them named “Trust”) that needs to be identified and discussed. This could get uncomfortable. If so, listen with an open mind. Try to understand your partner’s concerns without being defensive: “I really want to know how you are feeling about this.” Again, it might help to restate what you think you just heard: “So what I think you are saying is _________.” Keep your head in the game even when you’d rather tune out.    

Get clear on life with PrEP: PrEP may not make much of a difference at all beyond providing an additional barrier against HIV exposure. But it may also mean renegotiating some boundaries, or at least being up-front about boundaries that you have kind of been avoiding talking about. As the saying goes, put your cards on the table. Get specific with each other about what your relationship would be like with PrEP. 

Consider this conversation a work in progress: You may need to consider the PrEP decision from a variety of angles before you come to a decision that you can both be comfortable with. Remember: Patience is a virtue. Give your partner time and space to work through his/her concerns on their own as well as with you. Keep the conversation going. 

This may be one of the most important conversations you and your partner have had so far. Approach the PrEP conversation with honesty and with an open mind. Hear each other out. Share information. Try to understand each other’s concerns and expectations. Be patient and kind. Keep talking.

On a personal level let’s consider the HIV partners role in all of this discussion

Do not lose hope as what I have found is the more I became willing to be open about my status, coming to a slow acceptance of the reality myself, I found myself surrounded by love and acceptance from others. Daily I dedicated my life to making a difference in the attitudes and experiences of others towards the realities of HIV and AIDS. On this path for the one or two people that I discovered that rejected me or turned away in fear many more came towards me with love, embracing the ability to gain knowledge and hence have become part of the solution rather than through ignorance continuing to contribute to the problem.

Learning to again love myself and accept the virus through the tools I gained I found others embracing these tools too for issues in their own lives. For me the major lesson I had to learn and continue to learn afresh every day was that "Forgiveness is the path to self-love, and self-love is the key to inner healing". Forgiving myself for getting infected, forgiving the person that passed the virus on to me (I was not raped I went and through my own decisions and actions I got infected, so I take responsibility fully for that decision but that acceptance has given me the ability to forgive myself), forgiving the virus for entering my life as I never invited it into my body in the first place. 

All of this has released within me the ability to look myself in the mirror and I am able to say to myself, "Alan I forgive you and I love you, you are not a bad person". So I have learnt to love myself again. Through that love and my own acceptance of myself I was able to reach out and ask for help and guidance and have learnt from so many wonderful teachers along the path. As my light of acceptance and love shone bright I believe that it too has attracted others in pain and denial to me. What a blessing! And I do not give HIV the credit for any of this it was the teachers and myself that decided to rise up and be different. I did not sit on a pile of sand and say, “oh poor me, I am going to die”. I chose life and every day I am grateful just for today, for today I have the choice to make this day the best it can ever be.

I wish you too the ability to continue to shine as you already do and I know through your path you too will find the love and acceptance from a person like I have. I met my life partner in November of 1997 and disclosed my status to him, yes he needed his own time to learn and come to acceptance of the situation. Together we have walked different paths at times but always hand in hand. What a blessing that has been. My daughters and family too have had to deal with my status in their own time and in their own way and I am blessed again with love and acceptance.

Start with your own journey of acceptance and learn again to embrace yourself as a unique, special and wonderful person and without a doubt people will be drawn to you and the love you have to share and give. 

Nobody ever said this path is easy but my word, has it been a wonderful experience, I wish the same for you

Alan Brand

Employee Wellness Consultant and Specialist HIV and Employee Wellness Training Provider

www.positivelyalive.co.za