This article by Mathew Rodriguez first appeared on TheBody.com here.  

As a licensed therapist working with people living with HIV, Damon Jacobs heard about pre-exposure prophylaxis (PrEP) as an HIV prevention strategy. When he found himself newly single after being out of the dating game for almost a decade, he re-entered a dating pool that was not at all condom-friendly. To deal with this, and to finally come to terms with his distaste for condoms, Damon began taking PrEP in July 2011 to stay HIV negative.

Now, almost two years later, he's never missed a single dose -- and he's become an advocate for education around PrEP, though he acknowledges that it may not be the right strategy for everyone. From dispelling myths around anti-condom attitudes to advocating that people be able to talk to their doctors about all aspects of their sex life, Damon reminds us that sex isn't dirty, and we can have sexual pleasure, but we have to be smart and know our own bodies.

Can you tell us a bit about your background and experience in the HIV community?

I'm a licensed marriage/family therapist in New York state. I'm also licensed in California. That means that I work with people in relationships. Sometimes I work with couples in the room. Sometimes I work with individuals who are in couples.

I was getting my formative education and training in psychology in the San Francisco Bay Area in the mid-early 1990s, in the early days of HIV/AIDS -- or, actually, it was after the first wave. That was a time when loving people with AIDS and knowing people with AIDS meant losing people with AIDS. You would see people one day and then the next day, you wouldn't see them. That was before we had treatments. And that really affected a lot of the way that I continued to want to be active in the HIV prevention, education and treatment community -- also as a therapist, as someone who could help people infected and affected by HIV to have lives that were still meaningful and purposeful and pleasure-filled.

That's really been the mission that I've had for the past 15 to 20 years, is trying to promote a sense of empowerment, and mental and spiritual health for people infected and affected with HIV -- people that are, often, in relationships with other people who are HIV positive, and a lot of serodiscordant relationships (meaning that one person is negative, one person is positive) -- and helping them negotiate the boundaries and agreements and how they discuss issues around sexuality, around sexual expression.

When was the first time that you remember hearing about PrEP?

The first that I remember hearing about PrEP was actually around Thanksgiving, the day before Thanksgiving, of 2010. I try to keep up with the latest research, and I had just heard about this study. I didn't really know anything about it. I just heard that there was this study called "I-Something." I thought it was like an Apple computer or something, because it was called the "iPrEx study." I heard about some sort of pill that could potentially prevent someone who was negative from becoming positive. And I thought, "Well, that could be interesting." Then I didn't really think any much more about it for another six months.

During those six months, a long-term relationship of mine was coming to an end, and I was getting back into the dating world. Also, the cruising world. I realized that in the seven years that had passed since I was last single, a few things had changed. For one thing, the partners I was meeting had a very different attitude around condoms than they had had in the early 2000s. They didn't want to use condoms. And to be honest with you, there were times I didn't want them to use condoms, either. For the very first time in my life, I was in this confusing state of, "Wait a second, I've been this prevention advocate about condoms and lube for all these years. And here I am, not exactly holding myself to the same standards."

So, I heard about this information session about PrEP that was going to be happening at GMHC in about June of 2011. And I thought, "Well, I just want to know more about this." I didn't think it was going to apply to me in any way. But when I got there, there were some of the researchers and some community advocates that were sharing the information that was available. And when I heard the researchers say that the variable aspects of efficacy in the iPrEx study ranged from 44 percent and 90 percent ... well, 44 percent wasn't going to sell me. I wasn't going to play that game. But when I heard that it was 90 percent amongst participants in the study who actually took the medication consistently, between 90 and 92 percent, that's when my ears perked up. I was like, "Wait a second, maybe this is something for me. Maybe this is something that would not only positively impact the people who I work with and my friends and my clients, but maybe this is something I would benefit from." Again, I was having a much more difficult time maintaining the consistent use of condoms than I had had before. Realizing that there could be a medication that could actually assist me in maintaining my HIV-negative status by about 90 to 92 percent made me want to learn more about it.

I talked to the researchers, and I got some of their information after this event at GMHC. I then learned more about the iPrEx study, and by that point the CDC (U.S. Centers for Disease Control and Prevention) had a page on their website for doctors to go to if they wanted to prescribe this as an off-label medication, because it was not yet approved by the FDA (U.S. Food and Drug Administration) at this point. It would still be a year away before the FDA would approve it. But there was still plenty of information about the iPrEx study and information and guidelines for doctors -- even in 2011.

So, I printed all that out, took it to my doctor, who I have a very good relationship with, and said, "Look, this is what I'm learning. This is what the research is saying. And, I'm having a harder time in my early 40s staying safe than I ever had in my 20s or 30s. I think this might be the right thing for me." He looked it over, he thought about it, and said, "Yep, I agree with you." That's when I started PrEP. I started July 19, 2011, and I've not missed a single dose since. We are now in March of 2013.

What I've since learned and what I've become more knowledgeable of, what we've become more aware of, in the time since the iPrEx study, is that the participants who took Truvada (tenofovir/FTC) seven days a week -- who did not miss a dose -- appeared to be 99 percent less likely to contract HIV. The original estimate that they were putting out there was around 90 to 92 percent. Maybe it was always known, or that knowledge was not made readily available, that that subsection of the 2,500 participants who took this seven days a week appear to be 99 percent less likely to get HIV.

Now, condoms, which I've relied upon to stay negative, despite having positive partners, despite having positive boyfriends, which I always have, those are about 98 percent effective. So I knew when I was being sexually intimate with a positive partner with condoms and lube, there was 98 percent protection, and I could work with that. With PrEP now, with 99 percent efficacy -- if taken everyday -- wow. Wow. Revolutionary.

It confuses me why more people don't know about this. It may not be the right decision for everybody. For me, I really had to think about it from a medical perspective. From an emotional, sexual perspective, I had to think whether this was the right choice for me or not. But, the fact is, it has been approved by the FDA for this use since July 16, 2012. And the majority of the people I know, the majority of the people I talk to, don't even know it exists, much less that it has been approved -- and that many insurance companies pay for it. It baffles me how we can have such an effective tool in the fight against HIV and so little information out there about it.

Can you tell us about your PrEP regimen? How do you remember to take your pill, and when do you take it?

I have a pretty consistent routine, and I always have. Well, not always, but as long as I've been health conscious. I take vitamins. I'm not a health food nut; to be honest with you, I hate healthy food. I live off pizza. That's the thing. But, I take multivitamins. I take multivitamins that are rich with all these dried-up vegetables; they come from a special farm in Wisconsin. They're really good for you. So, that's really an important part for me, is to maintain a vitamin regimen and to eat breakfast every single day. Which is another thing we often do, all of us do, to neglect our self-care. It's so important. And I drink coffee. So, I wake up; I have my breakfast; I have my vitamins; I have my coffee. That was already an established routine in my adult life. Those are important things I do to take care of myself and start the day right. PrEP was just one thing to add into that. It wasn't anything that was inconvenient. It hasn't been something I've forgotten. It's just with the vitamins now. It's on the same little thing that the vitamins sit on, so I don't forget.

Did you feel that you had to go through a Truvada "coming-out process" where you had to tell people in your life that you were making a decision to go on PrEP? I mean friends and family, not sexual partners.

Who likes to talk about anal sex with their friends and family? I mean, I kinda do, because that's the field I work in, and those of us who work in the HIV field often do anyway. Nevertheless, it's not always a common conversation that you have at the dinner table with your parents. And before it was approved, honestly, I was concerned about talking about it. I was concerned that my insurance would cease supporting this if I was open about it. The shift in me now telling my friends and family and trying to get the word out there is because the FDA did approve it. It's all on the record with the insurance companies.

So, yes, it was weird. I had to explain this to my parents before talking about this publicly, because I'm friends with my mom on Facebook, and I thought that, quite possibly, she's going to see some of my shenanigans. So, I explained to them, "If I was a woman and I told you I wanted to take birth control pills, would you support me?" And my parents were like, "Yeah, we'd support you on that." Then I said, "Well, if I told you that there was a pill that could actually prevent me from becoming HIV positive by almost 99 percent, would you support me on that?" And they said, "Why would you need that?" Ugh, not what you want to hear. So, basically, I explained to them the idea of oral prophylactics, of prevention, of responsibility, of prioritizing my mind, my body, my spirit. That's consistent with the work I've always done, both personally and professionally. And this was very much in alignment with that. That they got; that they understood.

The other thing with friends is just that people don't believe it -- because there's so little information out there, because this has not really been covered very much. So, the friends I told about this, they didn't disapprove, they were just scared. They didn't really believe that this works. They didn't think this was real. They just thought I was going out and being self-destructive. They don't think that now, but in the beginning when I was starting to talk about this, my friends were concerned that I was on this binge of self-destructive, hedonistic, bug-seeking anarchy. And didn't really understand. So again, I did my best to show them the research, show them the data that were out there. Explain to them that this was being done with a doctor. Time has shown that, OK, we're on the right path here. We know what we're doing.

How do you broach the subject of PrEP with potential sexual partners? Do you feel like you can say, "Oh, it's OK, I'm on a pill." Run us through that whole song and dance.

Well, as I said, dating in 2013 is really different from 2003, and one of the biggest differences is that the condom conversation doesn't happen half of the time. In San Francisco in the 1990s, there was no treatment, and half of the men in San Francisco were positive. So, it was pretty much a given that, if I was going to be sexually active, that 50 percent of the people I was going to meet were going to be positive. So I just assumed everyone was positive, regardless of what they told me, and acted accordingly. But there was often a conversation; there was some acknowledgement that a condom was being used.

A lot of guys don't use condoms and don't talk about condoms. Now, from an education, from a prevention standpoint, that's terrifying! But it's also for real. But to answer your question, it doesn't always come up. The conversation doesn't always happen.

When I am with a partner, or if I'm dating someone who is positive, they will tell me that they're positive, and I will tell them about PrEP, and sometimes the response is "Phew! Good!" And other times, the response will be, "Well, we're still using condoms, because never in a million years would I knowingly put someone at risk for HIV. I just won't do that. That's not my principle." And that's a response I often get from the positive community. Here's what I say: "All right, cool, I understand. But here's what I also want you to consider. Daily use of PrEP has been shown consistently in different research studies to be 99 percent effective in preventing HIV. Daily use of antiretrovirals by someone who is positive has been shown to be about 96 percent effective in reducing the transmission of HIV. On my side, I've got 99 percent protection, on your side, you've got 96 percent protection. The likelihood that I will be getting HIV from you at this point in time is pretty miniscule."But, to be political on another subject, when you look at the escalation of gun violence in this country, and you see that about 30 murders a day are happening in America in which people are being killed by guns, I feel like the likelihood of me getting shot right now is higher than the likelihood of me becoming HIV positive with those odds. So, I put it like that to partners and then I say, "So, what do you think?" Sometimes, they say, "Nope, I still will not have sex without condoms." And there are people who are like, "OK, I see where you're coming from. Let's get busy." And I respect people's right to use condoms. Which is one of the biggest misconceptions about people who take PrEP. We're not the anti-condom police.

They think that you're the "barebacking brigade"?

Radical barebacking brigade! On the streets! We're talking about PrEP as one strategy to prevent HIV, not the strategy to prevent HIV. It is one strategy to prevent HIV. Along with condoms, along with positive people knowing that they're positive and taking antiretrovirals so that they cannot give HIV to another person. It has been an opportunity for people in serodiscordant relationships, including myself, to experience more intimacy and more pleasure than ever before in the 32 years of this thing called AIDS. And I, honestly, didn't know if I would ever see that in my lifetime. I really didn't think I would ever see that in my lifetime, to be honest with you. It's really been a revelation in that way. So, to answer your question, sometimes I talk about it, sometimes I don't.

Does the condom conversation ever come up around STIs (sexually transmitted infections) other than HIV, since PrEP only protects against HIV? Or do people just not talk about it?

I'm telling you from my experience: People are not talking about HIV and they are definitely not talking about STIs. I'm not saying that's good. I'm not saying that's right. I'm not saying that's healthy. I'm just saying that's the reality of many hookups and of many of the conversations, or lack of conversations, out there.

This is why it is so so so important for people to have medical care with a doctor who they trust, who they respect. I always say, "If you can't talk to your doctor about getting fucked up the ass, then you have the wrong doctor!" You need to have a doctor who you trust. If you feel judged or criticized or condemned by your doctor because you have a healthy sex life or a sex drive, find a doctor who you trust. They are out there. In some areas they are easy to find, and in some areas they are not so easy to find.

You are a consumer. Not the patient. You are a consumer. That's a very different paradigm. Because a "patient" is passive, and just has to do what the doctor tells them do. A "consumer" can say, "If you don't treat me with a certain level of respect, and if you don't engage in a sophisticated, adult, respectful conversation with me about anal sex, then I, as a consumer, can go to somebody else who is willing and able to do that with me." That's the reason we have to have really positive relationships with the medical community, because part of taking PrEP is that it's so important to see your doctor consistently, have your blood drawn consistently, and get tested for other STIs, because PrEP does not offer ANY protection against syphilis, gonorrhea, herpes, all that fun stuff. There's no protection there. So, I do get my blood and urine drawn from my doctor every three months to screen for that.

If someone were to come up to you and ask you, "Hey, who should be in the conversation about PrEP?," what groups would you name?

We know, statistically speaking, that there are about 50,000 new infections in the United States every year. For those of us who want to champion prevention efforts, I think we did a great job in the '90s of bringing down new infections. I used to stand on the corner of Sanchez and Market in San Francisco with those pins that said "100%" and give out condoms and lube and pins, because the message was "100 percent condoms and lube all the time!" Not fully understanding at that time how we were inadvertently creating a shame around those people who didn't use condoms and lube all the time, and kind of making their voices silent.

But, I will say this: If you look at the infection rates during the '90s and the early 2000s in this country, they continued to decline until 2004. Since 2004, almost the last 10 years, it's been about 50,000. So, who are these 50,000 people? In New York City, it's overwhelming black gay and bisexual men between the ages of 18 and 25. These are the group of people that are testing newly positive most frequently in New York, and I think that's also occurring in major urban areas across the United States. This is the population that needs to know about this. It's important that 40-year-old white guys know about it too -- like me! It's really important that everybody knows about it, but especially to help the message get into the communities where HIV is being transmitted at the highest rate.

Fifty thousand new infections in this country is 50,000 too many, especially now that we have a new, effective prophylactic prevention tool. There's no need to have 50,000 new infections in this country. There's no need to have 25,000 new infections in this country. But what if we could at LEAST reduce the number of infections by 50 percent? Wow. Wouldn't that be something? Well, you know something? PrEP, even when taken inconsistently, has been shown to be 44 percent effective. Even with people who took it once or twice a week. Forty-four percent is not enough, but it's still more than what we've had for the last decade. It's more than what just condoms and lube are doing if they're not used. So, I would say that anyone who is sexually active right now -- regardless of age, regardless of gender -- because we're also seeing a lot of new, I don't think it's that many, but there's always been a subsection of men who are in their 50s who did survive that first wave of HIV/AIDS, survived it as HIV negative, and experience something called condom fatigue. Or just think "Screw it" or "Hey, the meds are out there" or "At this point in my life, I'm going to die from something else, so why not, who cares about HIV." That's also the group who needs to know that there is a non-latex alternative to safer sex. So, it needs to be out there for people who are on Grindr, on any of those cruising websites, and are hooking up, and are not using condoms 100 percent of the time. We simply do not have any reason for the infection rates in this country to continue to be that high.

Have you had any personal medical side effects from taking PrEP?

Not a thing. I would not even know I'm taking it, except it's a little blue pill that I take every day. No nausea, no nothing. My doctor is monitoring my blood to see if there are any side effects that I can't anticipate, that I couldn't feel, like kidney impairment or bone density reduction. Knock on wood, so far, so good. I personally have no side effects.

How would you recommend someone start the conversation about PrEP with their doctor?

Bring information with you. The great thing is that now the FDA did approve it. So there's so much official information -- FDA, CDC stuff, the stuff that's on TheBody.com -- there's a lot of really credible websites now that have valid, intelligent information about PrEP.

Talk about the research side. That's what doctors want to know, for the most part. Some of them may say, "That all sounds good, but I don't want to give you a prescription to go out and get HIV." And you say, "Oh, but look, I've actually found out -- study after study -- that if I take this seven days a week, I can be 99 percent protected from HIV. I'm not saying I'm going to go out there and get exposed to HIV." I've even said go and ask your doctor, "What if there was a vaccine for HIV? Would you ask your doctor for a vaccine if that was available? Well, we don't have a vaccine, but we do have something that's 99 percent effective until we do have a vaccine." Or I often say to gay men, "Think about if you were a woman: How would you approach your doctor about taking birth control pills?" The idea is, you can have sex for pleasure without adverse consequences.

Most of us grew up in a sex-negative paradigm, meaning -- especially for gay men -- there's a part of our brain that has internalized, "Sex is bad. Sex is dirty. Sex is embarrassing. Sex is shameful. I 'shouldn't' have these desires. And if I do feel these desires, then it's kind of wrong to feel good about them, or to talk about them." What I try to do is to get people to get around that and talk about sex as an affirmative, healthy activity that people can do. It can be done with respect, it can be a physically gratifying experience, it can be a spiritually gratifying experience, and there's nothing to be embarrassed about for enjoying that.

So know that. Own that. And take the data to your doctor and have a conversation. She or he may need some time to digest all that. They may not have heard of it. If you are the first patient or the first consumer to come to them and say, "Hey, I want this," they might need to digest that a little bit. They might need to look through some of your research or they might need to do some research of their own. They might need to do some consultations with some colleagues. Let them have that. They might need a few weeks. That's OK. But then, follow up, and find out. And if they're not going to support this, you don't have to continue to see them.

Now, all that being said, there may be medical reasons they don't agree with you taking PrEP. If you have certain medical conditions that could make you more susceptible to kidney failure or bone density reduction, your doctor may not advocate for this on medical grounds. But that's different from moral grounds. So I would say be clear in your heart, be clear in your mind, about asking for something that will empower your body, your mind, your spirit. That will keep you healthy in the long run, and don't be ashamed of asking for that.

Have you gotten any negative reactions from any communities about taking PrEP, and if so, how have you dealt with them?

The only negative feedback I've gotten has been when I've done something public or gone on a website or done some kind of presentation where it was on the Web and people would leave comments. These are the kind of websites where anything you put there's going to be negative comments, so I don't even read them to be honest with you. Those are anonymous; they're indirect.

The only negative response I've gotten has been from a specific service organization that has been publicly opposed to this -- that, for their own reasons, which I don't fully comprehend, don't think that it's wise for people to have the education and the information and the tools to keep themselves safe and HIV negative. I can't explain their motivations -- only they can -- and when they try, it makes no sense to me anyway. That's really the only negative feedback I've gotten.

You might be able to tell, I'm a pretty independent thinker. I've kind of always been headstrong and stubborn and done things my own weird way. So, people who know me already kinda know that this is Damon's life, and comments are not solicited. Friends and family who know me have expressed concern and I understand that and I respect that. But no one has come at me with a sex-negative "should" about this.

Is there anything else you want to say to our readers about PrEP? Something you want to touch on?

I certainly hope this makes people think about what's right for them. It's not up to me to tell anybody what's right for them. But if people want to know more, they're welcome to contact me at my email, This email address is being protected from spambots. You need JavaScript enabled to view it. , or contact TheBody.com, or contact your local HIV/AIDS resource organization. Ask more questions. Ask me questions. I don't know everything, but if I don't know, I'm happy to help people get the answers.

But here's the most important thing! This is not a drug that can be taken casually. This is not a medication you start, stop, start, and stop. This is not a Fire Island weekend party drug. This is my concern about PrEP. This is my worry. That is where there is danger for resistance to come in, and I'll explain what that means. What happens with Truvada in HIV-positive people is that Truvada is used in combination with other meds to keep the viral load down to zero, so that someone who is HIV positive can have a long quality and quantity of life. Truvada is used with other meds to make that happen. And so, in someone who is negative, Truvada is used alone. Truvada is the only medication.

What happens is, if someone is HIV positive and starts Truvada alone without other medications, their body can build resistance to Truvada. Let me say that again -- if they don't know they're positive and they start Truvada alone without taking it in combination with other meds, they can build resistance to Truvada. So, someone may think, big deal, who cares, there are 20 million meds out there. The big deal is that the most effective HIV meds on the market and all of those one-pill-a-days contain an element of Truvada in them. So, if you are resistant to Truvada, you are taking a lot of medicines off the shelf that can't help you if you are positive.

This is the danger. This is why it has to be done in tandem with a doctor, with a medical professional. Because what your doctor will do is first make sure that you are HIV negative. That you are not positive. But, today's Thursday, if I'm positive and I don't know it, and I'm like, "Party weekend! Black party! I'm going! I've got my Truvada, I'm ready!" If I take it without knowing I'm positive, then I might build resistance to Truvada and it's going to make the possibility of living a long, healthy, satisfying life as a positive person much more challenging.

So this is what people need to know. Take it with a doctor. Make sure you are HIV negative first. And do not take this sporadically as a party drug. Because that's where people can get in trouble.

This transcript has been lightly edited for clarity.

Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.

Follow Mathew on Twitter: @mathewrodriguez.

My name is Josh Kruger and I’m HIV-positive. The details of my seroconversion are irrelevant. Whether I was a needle drug user, the son of an HIV-positive mother, less than consistent with my condom use, or a medical professional exposed inadvertently to the virus, at the end of the day, I’m HIV-positive. Regardless of the reason or the background, I am living daily with the same virus other HIV-positive individuals do for many of these same reasons. 

That is perhaps the most interesting part about HIV. There is a culpability and a responsibility involved with it that does not exist with other chronic medical conditions. Have you ever asked a diabetic how he got it? Or, perhaps, asked someone with hypertension how long he had it and if he knew who gave it to him? Of course not, and it’s wrong to equate HIV with these conditions just as it’s wrong of me to act as though men should ignore my status and feel absolutely comfortable dating or having sex with me.

From a practical and medical standpoint, HIV is comparable to diabetes, and many would argue it is easier to live with HIV than diabetes – medically. Psychologically and socially, however, HIV is not on par with these and for us to lie to ourselves and our community and ignore the overarching moral and philosophical question surrounding HIV does a great disservice and impedes honest discussion.

This is most apparent in online profiles, the easiest and most accessible way to peer into the id of the modern homosexual. “Clean and want to stay that way.” This is a common and rather boringly typical statement in a profile you’d find on any app or website, one I myself thoughtlessly uttered once or twice in the past. But consider for a moment the logical implication of saying this. If being HIV-negative is clean, then conversely, as an HIV-positive man, I am dirty. And, I obviously deserve what I have because had I not acted recklessly or stupidly or taken unnecessary risk, I’d not be saddled with this tarnish and grime flowing through my bloodstream.

Obviously, I did not “want to stay that way” enough, you might think. But regardless of how fastidious about hygiene I may be, regardless of the fact that I volunteer or that I am a good man and a good neighbor or that I vote in every election or that I pay my taxes or that I’m an uncle to a lovely five-year-old boy, I am inherently unclean and therefore untouchable.

With the smug self-satisfaction of, so far, having avoided the virus, one can summarily dismiss and marginalize an entire population of human beings. And it’s happening. Yet, sometimes the negative reaction about being positive comes from the same individual barebacking “other neg guys” and who loves Gay Bingo, but he’ll delete my email without having read it because I’m one of “those.” The other. The unclean, irresponsible black sheep, the drunk uncle at Thanksgiving who has the inconvenient ability to remind people of failure.

I’m entirely too realistic and the issue too profound to think about during the search for sex or dates these days. And, what’s most intriguing is that some men will have sex with me so long as the topic isn’t even broached. Act like HIV does not exist, and the pool of sexual partners – including HIV-negative men – increases ten times over. But mention HIV the least bit in conversation or online, and you’ve become the asexual advocate.

And, no matter how physically strong or robust I am, no matter how healthy or professionally ambitious, once HIV is brought up, I’ll always be a cliché, a sick AIDS case, the walking embodiment of God’s divine judgment (I rather like that one, actually.)

But what’s perhaps most surprising about becoming HIV-positive is the amount of men who suddenly become HIV-positive the minute you are. That is, men in person and online – who for years insisted they were HIV-negative – are now quietly reaching out or implying that, perhaps, they were not as honest as they could be.

Why would they lie or conceal their status? Perhaps it’s the same reason I paused when I was asked to write this. Even now, I’m afraid. What exactly am I afraid of?

Well, I don’t date or have sex with anyone who isn’t aware of my status. Those I truly love in this world were all made aware of it the minute it happened. Legal protections are in place to ensure that I am not hurt financially or professionally because of my status. So, what is the reason I and these other men have such trepidation surrounding public affirmation, this second coming out, so to speak?

Your online profile – the one where you talk about being “clean” – might have something to do with it.

Publication of this piece earlier appeared in Josh’s own blog here and   in Philadelphia Magazine’s G Philly Blog on April 25, 2012 found here. 

The CBC this week reported Health Canada will allow men to donate blood if they haven't had sex with a man in the last five years, a change in policy that will go into effect in the coming weeks. Here is a statement from the Canadian AIDS Society received May 22. 

Ottawa, ON – The Canadian AIDS Society (CAS) acknowledges that Health Canada today approved a change to the blood donor deferral period currently imposed on men who have sex with men (MSM) from indefinite to five years from last MSM activity.

The Canadian AIDS Society has, along with other LGBT groups and patient groups, worked to support a proposal from Canadian Blood Services to Health Canada in December 2012 to change the MSM policy on blood donation. The proposal also calls for regular reviews based on scientific data to be collected.

CAS has been an active partner with Canadian Blood Services and others, working for many years to support the five-year time-based deferral as an incremental step towards a behaviour-based screening model for blood donation. Monique Doolittle-Romas, Chief Executive Officer of CAS said, “While a five-year deferral is still too long, we see it as an important step in the right direction. Ultimately, though, we’d like to see a model based on a donor’s behaviour rather than one based on sexual orientation and gender.”

With this important shift in the blood donation policy, CAS believes that there will be an opportunity to gather further evidence to create an even shorter time frame for the deferral in the future. However, Health Canada must continue their support through an increased commitment to research in this area.

“Protecting the safety of the blood supply in Canada has always been and will always be an important issue for the Canadian AIDS Society,” Doolittle-Romas reiterated

In June and July, CATIE is presenting four webinars that focus on new developments in HIV and hepatitis C (HCV) research, integrated approaches to HIV treatment and prevention, and the integration of HIV, HCV and other sexually transmitted and blood-borne infections in frontline work. 

These webinars are designed as a good orientation to the issues that will be discussed at the CATIE Forum: New Science, New Directions in HIV & HCV, September18-19, and CATIE recommends that all those planning to attend the Forum, or follow it via live-streaming, sign up for all four webinars.

These webinars will be of interest to many healthcare providers, community-based and public health workers, and program planners, so we encourage anyone who works in HIV and HCV frontline work to join us.

Register now to attend the CATIE Forum Webinars

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Durant les mois de juin et juillet, CATIE présente quatre webinaires qui font le point sur les nouveaux développements en recherche sur le VIH et le VHC, les approches intégrées du traitement et de la prévention du VIH, ainsi que l’intégration du VIH, du VHC et des autres infections transmissibles sexuellement et par le sang dans la pratique de première ligne.

Ces webinaires ont pour but d’orienter les sujets qui seront discutés lors du Colloque de CATIE : Nouvelle science, Nouvelles orientations en matière de VIH et de VHC, qui se déroulera les 18 et 19 septembre; CATIE recommande à toutes les personnes qui ont l’intention d’assister au Colloque, ou de le suivre par l’entremise des webémissions en direct de s’inscrire à chacun des quatre webinaires.

Ces webinaires intéresseront de nombreux fournisseurs de soins de santé, des professionnels de la santé publique et communautaire et des responsables de l’élaboration de programmes;  nous incitons donc à se joindre à nous toute personne qui travaille dans la pratique de première ligne du VIH et du VHC.

Inscrivez-vous maintenant pour participer au webinaires du Colloque de CATIE.

As I write this, I am sitting on a train, making my way back to Toronto after spending two days at Concordia University (in Montréal), which housed the premiere (and potentially only) Beyond Failure! Symposium.

The purpose of the symposium was to provide a space to discuss the various areas within HIV which we have failed at, whether that be research, policy, activism, prevention or frontline services. The HIV and AIDS industry (and this is not exclusive to HIV) strives for success in all areas – in proposing projects, in the work done by AIDS service organizations (ASOs), in grant writing, etc. While striving for success and achievement can be viewed positively, the fixation placed on succeeding rarely provides the opportunity to reflect on challenges, shortcomings, or failures. 

Failure is uncomfortable. In evaluating failure, we are forced to examine our flaws, slip-ups, and transgressions under a microscope. Perhaps this is why many shy away from this kind of evaluation. Sometimes it’s easier to sweep our faux pas under the rug and move on. Unfortunately, in failing to address the failures, the opportunity to learn from these mistakes is lost and we run the risk of replicating our mistakes over and over again, never having learned the lesson in the first place.   

Failure is threatening and often personal as we (occasionally) tie our successes to our identities and by default, our failures have the potential to negatively impact how we understand ourselves. When failure is conceptualized so closely to our identity or sense of self, it’s no wonder it has the potential to create considerable discomfort.

Beyond being uncomfortable and depending on your role and/or relationship to the HIV movement, failure can mean the loss of funds, the end of a research project or ASO or in a far more corporeal sense, the difference between life and death.   

As Tim McCaskell so eloquently stated in his keynote address at the symposium, “AIDS is like a lens: when you look through it, all of society’s problems are magnified.” From here, Tim provided an insightful way of re-framing the concept of failure within the context of HIV by asking: is the goal to destroy or break the lens? Or is the goal to challenge the social conditions that create HIV? The point? Failure can be determined by the perspective applied to the circumstance or scenario and the often imaginary line between failure and success is both arbitrary and subjective.  

A call for abstracts for the symposium was released in fall 2012; anyone interested in submitting an abstract was asked to briefly outline what aspect of failure they would like to discuss. Abstracts were categorized into small groups (5-7 people per stream) based on common themes including prevention, risk, community, and social policy & state. For those whose abstracts were accepted there was the expectation of completing a paper in advance of the symposium that would be distributed to other members of your group. The intention was for everyone to read the papers in advance of the symposium and come prepared to address commonalities, divergences, and of course, failures. This symposium format created the space and possibility to have rich meaningful dialogue, which allowed for a more nuanced engagement with other presenters’ work.   

I submitted an abstract which used my undergraduate and graduate experiences in international HIV research as a case study to highlight failure. Within my larger paper, I discussed how in both cases (undergraduate and graduate research), I felt unprepared, untrained and naïve yet I was situated as the research “expert” regardless of my inexperience both in HIV (particularly as an undergraduate) and in Namibian culture and history (where both my research projects took place). For more details on this work, check out my previous PositiveLite.com article here.  

I was grouped within the community stream along with another young female activist from Toronto, a delightful Parisian, and a post-doc from Montréal. The groups were facilitated by the symposium’s organizing committee (our group was lucky enough to have Viviane Namaste in it), which allowed for bilingual and cultural exchanges.   

Many important and critical reflections arose from our group discussion including who is “community” and who defines it? Can we belong to a community if you don’t share the same lived experiences as other members? In identifying competing definitions of community, do we inadvertently exclude people from various communities? And how do we negotiate multiple social locations and identities in the context of community? 

I found that my own work (using anecdotal experiences as a young researcher) drew close parallels to another group member who spoke about the role of allies in the HIV movement and encouraged people who might take up the identity of “ally” (both with the context of HIV and beyond) to critically reflect on what motivated them to engage in this work. Comparing the work of researchers and allies, I found many convergent points including: that the choice to do research or join a movement often starts from a place of “good intentions”; the failure to meaningfully involve and incorporate PLWHA creates situations of tokenism; the existence of the insider/outsider dilemma (who can be a researcher and/or ally?); and that often if advantages or benefits are up for grabs, it is usually the researcher (sometimes the ally) who is on the receiving end of them.   

As someone who identified both as a researcher and as an ally (in various movements), it was uncomfortable to put my failures on the table and bring into question my role as an ally. The more and more I engage in critical work, the more I relish in the circumstances which force me into those uncomfortable corners. I believe that when we’re in these places, we have the potential to radically re-vision ourselves, the work we do, how we show up in the world and how we engage with it.

I think one of the biggest learnings that came out of the symposium (and through engaging in thought-provoking conversations with other participants) was the re-realization that becoming an ally* (and a critical, ethical researcher) is a continuous process which requires of us that we always put ourselves uncomfortably under the microscope to examine our privileges, how much space we take up (physically, intellectually, verbally, etc.), how we are oppressed and how we oppress others.

Many of the same principles of doing ally work can easily transfer to the role of researcher, particularly when the researcher isn’t working within a community they immediately/wholly identify with. In addition to the constant assessment of social location and privilege, when locating yourself as ally or researcher, it’s important to recognize that that will usually mean not taking a leadership role in either the movement or the project, taking your cues from those community members with lived experience and working collaboratively. 

Though I didn’t necessarily encounter any earth-shattering revelations at this symposium, I did very much appreciate the fact that it took place and am grateful to have been able to participate in it. Creating space to talk about our collective and individual failures is rare but frankly, shouldn’t be. So many crucial lessons can be learned through failure and if we spend our time hiding/trying to forget where we went wrong, we’ll miss the important opportunity to learn how to do things differently –and hopefully better - next time.   

* If you’re interested in reading more about becoming an ally, check out Anne Bishop’s website here .

The title quote was written by George Bernard Shaw in ‘Saint Joan’ in 1923 but if ever a saying is timeless it’s this one.

The reason I’m dragging it out of the cliché locker is because I feel I have to take issue with a couple of articles that have appeared on PositiveLite.com recently.  

They are IS HIV TRANSMISSION POSSIBLE WHEN VIRAL LOAD IN THE BLOOD IS UNDETECTABLE? from CATIE and INFECTIOUSNESS coming from Aidsmap.com

I respect the work that people in HIV organisations put in to the struggle to control the virus and I appreciate the time and effort put in by writers who do their best to provide us with information – we’d be in a sorry state without them. I also know the perils of one article writer criticising another but I genuinely mean no disrespect. These two articles are pretty representative of what you will find all over the net and therefore my problem is more with the genre than the individual articles themselves.

The CATIE article addresses a question which is in the back of everybody’s mind. It’s crucial, both for positive and negative sex partners. The title suggests that the question will be answered but unfortunately that’s anything but the case. The first paragraph sums up what viral load actually is but hardly gives hard and fast rules which we can hang our hats on. It talks about the viral load being measured in the bodily fluids of a positive person. Surely it’s not. It’s measured in the blood and only very rarely in semen, saliva etc.

“Research shows that successful HIV treatment can reduce the viral load to “undetectable” levels and this can reduce the risk of HIV transmission. However, HIV transmission may be possible when the viral load is undetectable…The risk of HIV transmission when taking antiretroviral treatment may increase if sexually transmitted infections (STIs) are present…This risk may also be higher for anal sex than for vaginal sex.”

What do they mean, ‘can’ and ‘may’? We’re thirty years into the history of the virus. We should be hearing ‘does’ and ‘will’, not bet-hedging to cover all possibilities!

The following is something we’re all very aware of but what does a statement like this actually tell us?

“Viral load tests used in Canada cannot detect HIV in the blood if there are less than 40–50 copies/ml. Therefore, an undetectable viral load means the amount of virus in the blood is too low to detect, it does not mean that there is no virus present.”

First of all, we know the testing procedures are still limited but surely we’re entitled to ask why? Secondly, what the hell are we supposed to take from such a statement? Getting everybody to undetectable status is the universal aim but is pretty pointless if we don’t know how much of the virus has escaped detection because the procedures are lacking. Of course ‘undetectable’ suggests ‘less infectious’ but thirty years into the disease and its treatment and we still don’t know whether that’s entirely true. Until other bodily fluids are routinely tested we’re no closer to an answer and even then, the virus may be hiding in bone marrow, organs and brain tissue. Testing every susceptible piece of the body may never be possible but telling us we’re undetectable but maybe still dangerous, tells us almost nothing; we deserve better.

Another pretty meaningless statement is:

“Research shows that a lower amount of virus in the blood is usually associated with a lower risk of transmitting HIV to others, and a higher viral load is associated with a higher risk.”

Duh! And by the way, what research? We probably all accept the truth of this statement but what research proves that? Far too often the words ‘Research shows…’ are thrown at us in the expectation that we’ll accept that as gospel. Very often research is so small-scale and out of date that it is barely relevant. It is wrong to assume that the reader can’t cope with references to the exact piece of research and it should be expected that research is looked at with a critical eye but very often, ‘research shows…’ will back up a multitude of assumptions.

CATIE quotes HPTN 052 research to back up theories that a lower viral load reduces risk but that research was conducted amongst tiny groups of sero-discordant heterosexual partners in Africa and Thailand. The research is ongoing but trials to measure the same risk reduction when it comes to homosexual, anal sex…well you can whistle for that one! A lot of people hang a lot of credence on HPTN 052 but for HIV+ gay people, it suggests absolutely nothing and proves even less. To be fair, the CATIE article does point this out and even questions the relevance of the research but still draws conclusions that say we can reasonably assume that the same applies to anal sex. Uhm sorry, no it doesn’t!

When a paragraph begins with:

“Successful antiretroviral treatment can lower the viral load in the blood and other bodily fluids to undetectable levels and this can reduce the risk of sexual HIV transmission...Antiretroviral treatment may be much less effective than 96% when these conditions are not met.”

You know that it means very little. We want to know that in the majority of cases, ‘it will’!

More woolly information follows:

“A higher level of HIV in the semen, vaginal fluid, and rectal fluid may increase the risk of transmission when the blood viral load is undetectable. However, it is unclear how often this happens and how significant it is in terms of HIV transmission. Research shows it may be more common if a person has an STI, but can also happen in the absence of STIs.”

There they are again: ‘may’ and ‘can’, plus a ‘research shows’ and an ‘unclear’. How exactly is this useful information? The fact is that the research in all areas of HIV is still shockingly lacking and in the meantime we have to put up with guesswork. That's not good enough in 2013. If there’s no more money for  extensive and indisputable research; or no plans are on the table; or government and scientific bodies are standing in the way; or moral objections are blocking funds it’s the responsibility of HIV sites and organisations to say so and tell their readers the truth. “We just don’t know and this is why we don’t know,” is far more acceptable than ‘cans and maybes’. At least then we know where we stand.

Doesn’t this next sentence just sum it up?

“Although there have been no studies among gay men and other MSM, there has been one report of HIV transmission occurring between two men when the HIV-positive partner had an undetectable viral load.”

Pitiful, really! Are we going to have to take to the streets again to demand efficient and relevant research which will end up saving the state millions in health care and why aren’t our large HIV organisations leading the charge?

The second article comes from aidsmap.com, which is generally regarded (just like CATIE) as a reliable and up-to-date source of information. The introduction is as follows:

“Aidsmap.com reports about 10% of gay men taking antiretroviral treatment have low levels of HIV detectable in their semen, according to new research. Whether or not this level of HIV in semen is associated with transmission is unknown.”

Now I thought this was interesting and went in search of this new research. It stemmed from a University of California study into the effect of the herpes virus on HIV transmission (read more here.) It involved 46 people, split between so-called HIV transmitters and non-transmitters and could hardly be called ‘large scale’. The Aidsmap article refers to 114 men in the study but even that’s hardly a significant research group. The point is that Aidsmap presents this as fact, based on ‘a US study’ when in fact it’s a little more complex than that and to state that 10% of men on HART have low levels of HIV in their semen seems pretty conclusive, yet it is based on a small study concentrating on the Herpes virus. Again, the statement may be true; it may be relevant and important but we need more evidence to back up global statements like that. (Editorial comment. PositiveLite.com says: even more important is whether such low levels of virus have any significance, i.e the ability to result in transmission. Is in fact the semen issue a complete red herring? We suspect yes, given the transmission history -  or lack of it -  in people with undetectable viral load in their blood.)

PositiveLite.com has quite rightly questioned the accuracy of aidsmap's references to the HPTN052 research, which is trundled out yet again yet proves practically nothing for gay men.  (Editorial comment; PositiveLite.com has since received acknowledgement from aidsmap that the aidsmap information was incorrect and that a retraction (apology?)  will be issued shortly. The moral is, as Dave says, question EVERYTHING you read.)

The article then goes on to say:

“But there have been rare case reports of HIV transmissions in the presence of an undetectable viral load”.

What rare case reports? How many? Why isn’t this being investigated right now, on a large scale, to actually establish some facts? It’s almost as if HIV organisations and sites have become so accustomed to writing generalised pieces that repeat the same old suspicions and assumptions, that it has become a new truth of its own. Why aren’t they screaming out for new research and not settling for worn out cliché responses?

It goes on:

“Untreated bacterial sexually transmitted infections (STIs) such as chlamydia and gonorrhoea may cause viral load to increase in genital fluids, even if a person is taking effective antiretroviral treatment.”

‘May’! Why don’t we know for sure?

Finally, statistics are rolled out:

“They also found that 36% of study participants with a detectable viral load were shedding HIV in semen compared to 6% of participants with an undetectable viral load…A urethral bacterial STI was diagnosed in 4% of men, but these untreated infections were not associated with the presence of HIV in semen.”

Okay, let’s assume that the study involved 114 men and not 46. 36% of 114 is 41. Is it really valid to come to wide-reaching conclusions based on the results of 41 people? The urethral bacteria numbers are even less relevant: 5 people out of 114!

The point is that readers take headlines and believe them to be true, when in fact they’re often based on such small-scale studies that they barely merit a mention. Of course, all these studies may be revealing vital information and should be reported but if one (small) study suggests a trend then it should be replicated on a wide scale across the HIV community in order to establish whether it is more than just a medical soundbite. It’s the responsibility of authors and their organisations to look at these things more critically and if necessary make readers aware of the scale and validity of studies, statistics and suppositions.

The reader also needs to question anything that’s not clear, or seems to be stated as fact when it’s not proven. The problem is that life’s just too short to take the time to do that. So the promulgation of half-truths and loaded headlines becomes the easy way out, eventually leading to mistrust and suspicion.

This article of mine may seem like an attack on two highly regarded HIV information sources; it’s not meant to be. I have used them as examples of what we see every day in articles and discussions throughout the HIV community. We really do deserve better than to be fed meaningless conclusions based on ‘maybes’ and ‘possibilities’ but it’s not the fault of the authors. News has to be reported, no matter how tenuous the facts.

Unfortunately, it looks like the HIV community has to start demanding again. Demanding proper, well, funded and large scale research at home and abroad. The World Health Organisation has a responsibility (and the finances), as does the pharmaceutical industry and every other research or research-funding facility across the globe, including the major philanthropists like Bill Gates etc.

I’m fed up with endless arguments as to whether an undetectable status is safe or not, or whether TASP, PrEP, PEP and various other acronyms are the way forward, or whether the viral load in your blood reflects the true levels in your body. Just how safe is condomless sex between sero-positive people on HART? The questions are endless but I would like answers and soon. Some people and organisations are dragging their feet in providing them. It’s a question of having the political will to do the necessary research and damn well prove things once and for all and if the ‘climate’ makes it difficult to instigate the discussion and find the evidence, then we’ll just have to scream and shout until that changes. If it doesn’t happen then confusion drives apathy and stigma grows.

When you next read an article about the latest theory concerning HIV treatment and transmission; count up the number of ‘statistics, if’s, may’s, possibly’s and researches show’ and ask yourself if you are being presented with new facts and are you learning anything new. If the answer is negative then you may well be being short-changed!

I’m fully aware that some people will be irritated by this article but then I hope they’ll respond and widen the discussion. If I’m talking out of my backside, I hope you will say so  - but you’re going to have to prove it!