International Women’s Day feels a little like World AIDS Day, in that it is a mixed message; it’s about recognizing where we’ve been, appreciating where we are today, and considering how much more there is to be done. It’s at once a celebration and a call for action.

Sometimes people send out messages on International Women’s Day about celebrating the women in your life. For me, the day is not about loving, appreciating or celebrating women in my life. It’s about change. It’s about taking an honest look at how close we are to achieving, as the United Nations says, “equal rights, responsibilities and opportunities.” That means acknowledging some painful realities about the unique challenges women face, both around the world and right here at home.  This includes – for example -  gendered distinctions in levels of poverty, political power, wages/salary, sexual assault, and all forms of violence.

My hope is that this year, more men participate in International Women’s Day events. I’m never quite sure why men exclude themselves from events or initiatives that seek to address issues that are women-specific.  Maybe it’s because women need, at times, to have certain women-only events, such as “Take Back the Night” (although this too is changing.) However, more often than not, men are welcomed and encouraged to take part in women’s events.  At the Guelph-Wellington Women’s Health Alliance forum last year, which addressed barriers to women accessing services in the community, the only man who attended (someone from ACG, I’m proud to say) received a standing ovation.

I find it disheartening. Why shouldn’t men care about these issues? After all, women are not a “niche”. We occupy more than half of the population.

Even in the HIV landscape, women in Ontario (as of 2009) occupy 26% of all people living with HIV and 18% of new infections.  Many of us who dedicate our lives to the health, wellbeing and rights of people living with HIV are HIV-negative. Many of us who work to challenge homophobia are straight. (Myself included on both accounts). We don’t have to be directly impacted by gender discrimination or inequality in order to be affected by it or to want to challenge it. Our gender should not dictate our desire to create a world in which both genders equally thrive.   As Martin Luther King Jr., said “a threat to justice anywhere is a threat to justice everywhere.” 

On December 6, I took a quick scan on my Facebook page and saw that countless women friends had shared posts that honoured the victims of the Montreal Massacre and the meaning of that event.  I saw only two posts by men.  Both men belonged to the LGBTQ community, and I wondered if that meant they could relate more to the experience of violence or fear of violence based on gender norms.

I don’t want to use a silly Facebook anecdote to make sweeping generalizations, but I noticed, and it hurt. Why didn’t any of my straight man friends commemorate the Montreal Massacre victims?

This year’s theme for International Women’s Day is “Gaining Momentum”. It ties into HIV & AIDS perfectly. We now have a greater repertoire of tools to fight HIV than ever before. We have more knowledge than ever before. And after years of disappointments, there is renewed hope of finding both a cure and a vaccine.  We have the momentum and need to keep up the work, keep moving towards the goal.  We have momentum in gender equality too, but achieving equality requires the participation of all genders.

I can see the sky through the narrow window; it’s morning. I’m half asleep when the nurse comes into the room. I watch her go to the board that hangs on the wall in front of me. She erases the name ‘Rose’ and writes ‘Leah.’ She’s young and friendly and very energetic. She says, “Good morning,” takes my blood pressure, asks me if I’m hungry, says breakfast is on its way and that my doctor will be here soon. She asks, on a scale from 1 to 10, what my pain level is. My knee is only faintly throbbing, but I tell her 8 anyway; I know it’s best to stay ahead of the pain. She says she’ll bring me some morphine and then she’s gone. 

It was a difficult night. I couldn’t move my left leg, couldn’t sleep on my side as I normally do. The night nurse came in every few hours, checking on me, giving me pain medication. I would’ve liked to talk to her, but she’s quiet, and busy.  I dreamed of my partner Kirk being in the room last night, but now I know he really was here. I can see the things he brought me from home; my robe, sweat pants, a 6-pack of ginger ale. 

When I did fall asleep last night, I’d try to move my leg, tweak my knee and wake myself up. The room felt small and cramped and dark and I kept thinking about the past and the AIDS unit and the patients I saw there. I had to keep reminding myself that I will be going home, home to Kirk and a group of friends who will help me get through the first few weeks of recovery. I won’t be dying in this room, in this bed. But I could see them, the men on the AIDS ward, and how they did die there and did not go home. 

Leah returns with the morphine. She confirms my name and my age and then watches me as she injects it into the tube in my arm. She asks me how I’m doing. I tell her I’m okay and then, after a pause, that I used to work at San Francisco General, back in those terrible early days of the AIDS epidemic. I ask her if she knows that right here at St. Mary’s the first AIDS dementia unit in the entire world was created. She nods her head as I talk, removes a plastic bag from the IV pole above my head, but she’s not really listening. She puts the empty morphine hypodermic into a biohazard container and leaves. 

An elderly man wearing a white paper hat rolls my breakfast into the room, but the morphine has kicked in and I’m not really hungry. I close my eyes for a moment and when I open them, there’s a group of doctors standing around my bed. I recognize one of them from the operating room last night. He’s pointing at a tube that’s in my leg and draining fluids into a bag on the floor. When he sees I’m awake, he asks me how I’m doing. I feel like I’m on display and try to pull myself up in the bed. The faces of the team standing around me are so young. I want to tell them that I remember sitting with AIDS patients back in the 1980s, when the teams of doctors just like them would do rounds just like these. I want to tell them how the interns awkwardly stood at the foot of the bed, listening to the doctor describe symptoms of a disease that no one knew how to treat. I want to describe their faces and how they would stare at the misery that was occurring before them. 

But instead, my eyes close and I drift off to sleep. 

When I awake, the doctors are gone. The clock reads 11:15 and the room is filled with sunlight. The television is on; there’s news about the Middle East. It’s strange to see photographs from the outside when this room has become the world for me. I try to follow the images on the screen and remember how I used to sit and watch television with the patients on Ward 5A. There were times when there wasn’t anything to say and we would just sit quietly and watch TV  together. I remember November 1989 when the Berlin Wall suddenly came down. I went from room to room on the unit, turning everyone’s television on, making sure that the patients knew that somewhere in the world walls were coming down. I remember someone died that day and I wondered what it was like for him, to be leaving, knowing this moment in history was happening. Did any of it matter to those who were dying? 

The man with the paper hat returns with lunch. I haven’t eaten anything in almost two days and when I lift the plastic lid I see a piece of chicken and a few pale spears of asparagus. I pick off a piece of chicken and take a bite of the limp asparagus. Whenever I eat asparagus I remember my grandmother. She was a young woman during the Great Depression when food was scarce and so many were struggling. Whenever we were in her house we had to eat everything she put on our plate. If we didn’t like it or didn’t want it, she’d tell us how terrible it was when she was young and the days when people had nothing to eat. “You will never know,” she would say. “You will never know how bad it was, having to stand in line for bread, having to go to bed hungry!” If my father was at the table, he would talk about the war in Europe, how he saw many people starving, how terrible it was for the children there. Some times they would argue with one another, yelling at each other about what was worse, having to live through the Great Depression or being a soldier in the war. Over and over they would shout to each other, and us, “You will never know!” each trying to convince the other of the terrible suffering they had seen and experienced. 

I would sit still while they argued back and forth, staring quietly at the asparagus on my plate. I would think to myself that they’re both right, I will never know what it was like for them to be hungry or to be a soldier in a war. My grandmother would make my sisters and I sit at the table, sometimes for hours, waiting for us to eat the awful canned asparagus she had put on our plates. What good does it do to tell people about the terrible times you’ve been through? What does it achieve? I spit the asparagus out into my hand and put it back on the hospital tray. 

There’s a knock at the door and a woman comes into the room pushing a gray plastic walker in front of her.  She says her name is Susan and that she’s the physical therapist. She shakes my hand and asks me if I’m ready to get out of bed and go for a walk with her. I can’t believe what she’s suggesting, my new titanium and plastic knee is barely 24 hours old. Susan pushes the call button on the side of the bed and the nurse arrives. They disconnect the tube that is draining from my leg and then pull back the covers. Susan rolls the walker in front of me and smiles. I look at her in disbelief. 

“What do you think,” she asks. “Do you want to take a little walk with me?” I tell her I’m not sure, I haven’t gotten up since yesterday, that the surgery was only last night. She asks me to sit up and then slowly helps me swing my legs over onto the floor. I’m a little dizzy when I first sit up. “Great,” she exclaims. I’m hesitant and she says, “Mr. Wolf, your old knee is gone. It’s gone and it won’t hurt you any more.” I reach forward, grasp her outstretched arms, and slowly stand up by the side of the bed. “Take a deep breath,” she says. I do, but I’m afraid to take a step forward. “Really,” she says, “believe me. It can’t hurt you anymore.” 

To be continued . . .

So it's been a couple of weeks since I posted my last blog "No Shame For Being HIV+",  I thought I would write a follow up to share the reaction I received from it. To be honest, it took a large shot of courage to send that article off to be posted. I didn't know how it would affect the people around me. Would I offend someone, would they feel pressed to say something? I believe it could have been a really ugly situation……..if certain people chimed in on it. 

My story went up on February 11th, My name was there, my photo was there. I was up early to see it go public. I waited. I kept refreshing the page to see if anyone was reading it. I saw eight people, a half hour later it was up to 21, people were reading it. By noon we made it the feature story on the PositiveLite.com page. A bit later an email comes in; AIDS New Brunswick wants to feature it on their website. By 2 o'clock the views had doubled. 

I go back to my facebook page, one "Like", no ''Shares". At 1:30pm I had to go offline to attend a Monday afternoon get together at the ASO. When I get there, no one is aware of it being up online. I talked about it, told them how it was going viral. I know that not everyone in my circle who is HIV+ is out there doing what I’m doing and/or follow everything that happens everyday. One person still has dial up service so she can't access the site to read it. Two minutes later, the conversation died off and we’re discussing the sandwiches and coconut cookies. 

Back to the reaction to my story, I wish I could quote some of the comments I got on it, but there was basically only a couple from non-activist/advocates. I mentioned in the first part that the only people who forward or share HIV information are fellow advocates. So that’s been a rather uneventful two weeks with the others around me. 

When I changed my Facebook and twitter to do advocacy work, I emailed everyone who I thought should know what I was up to. Some didn’t know I was gay, let alone HIV+. I wanted them to choose whether they wanted to be subjected to all my HIV stuff. For the most part, I got a positive reaction: we were still going to be friends, they were glad I told them and they wished me the best in whatever I do. 

Maybe a year later, they aren’t even saying “hi” anymore. Maybe some of them gave up on social media all ltogether; who knows?  Not me. So, slowly I started to delete them from my facebook. I respect their beliefs, I would never come out and ask for them to share. I have my privacy settings so that only people I accept as friends see what I am sharing so taking them off my contact list works for all of us. 

The other day, I’m sitting online, doing all my social media stuff, trying to keep up with emails that were coming in, and out of the blue, I go back to my facebook page and refresh it. I scroll through most of it but then my eye catches a long post by one of my contacts, a very active advocate. In what he had written  was this snipit:  

“I logged into facebook to find a message from a friend, who told me that they were 'de-friending' me due to the fact 'I speak too much on the topic of aids”. (He responded to the guy that the name is AIDS.) 

Now I’ve never received anything like this but it is something I believe many of the people around me might be thinking but are unable to tell me. It is exactly why I wrote the first part of this. I seem to always look to family members or friends to get an idea of how I should answer questions their family or acquaintances might ask me. Truthfully, I get the feeling they would prefer I not say anything because those persons don’t know anything, because they haven’t told them. Sometimes they even answer the questions with “he’s semi-retired” or “he takes it easy now”. I think they call this “enabling”, because I am concerned about their privacy and comfort level. 

I am finding and sharing current information about HIV/AIDS, I’m trying to stop this fucking 1980s thinking that so many people still believe. I don’t get paid to do any of this. If I were, I don’t think I could do it with the same passion. Yeah, I’m passionate about what I am doing. If I hear I reached one person a day or a week, then I know I have done a good thing and that is my reward. 

I am writing about what it's like to actually live with HIV after thinking I would never have to. I had all the information but I still got HIV. It may not have traumatized me like it does many others but it’s something I have to live with the rest of my life and I have to do it in an informed and healthy way. It isn’t a death sentence anymore but it is a life sentence. You do live with HIV and you can live a very long healthy life. 

When I read blog after blog from young people in their twenties, writing about being diagnosed or their 1st anniversary it makes me say, WHY? What aren’t we doing to get to these people. HIV isn’t anything new, There is no cure. 

I have found the internet to be a place where I can share everything they need to know, the stuff they probably won’t hear any other way. 

Anyway, I hope that people genuinely aren’t ashamed of me or that I have HIV. I won’t hide it any longer. If I’m in your company with your friends and/or extended family and they ask me, “so, what do you do?” I won’t be silent, I am going to talk about it all. 

It’s too quiet, too many people are silent. I feel they are trying to drown me in stigma. I’m still able to swim, I can keep my head above the stigma, I will keep going. I have to because I’m going to live with HIV, and live well. 

Do I see us “Getting to Zero” the “AIDS Free Generation”? No I don’t, not at the pace we are going. I use to say that one day, everyone will know a gay person and it will change the way they feel about homosexuality. Now I say, one day everyone will know someone who is HIV+ and that will hopefully change the way they feel about the disease and most of all, about the person. I’d love to see that in my lifetime, but I am not that optimistic right now. I have hope though, I will always have that.

Len Tooley is a relatively young, HIV-negative gay guy who works in downtown Toronto as a gay men’s health promoter and an HIV educator, tester and counsellor. As a way of helping him stay HIV-negative, his family doctor prescribed him Truvada as pre-exposure prophylaxis (PrEP). 

In the first part of his interview with me, which we published two weeks ago, Len talked about what motivated him to go on PrEP. Last week he discussed the conversations he had with his family doctor about PrEP, his experience of actually taking Truvada every day and how he feels about asking his drug plan to cover its cost. 

This week, in the third and final part of our interview, Len responds to those people in the gay and HIV communities who are critical of negative guys like him who decide PrEP is right for them, about why he decided to talk publicly about being on PrEP and what he would say to others who are considering this option as a way of staying HIV-negative.

 ***** 

John: Len, I’d like to start off this third part of our interview by asking you to to respond to some of the criticisms we’ve heard about PrEP.

As you know, not everyone thinks that HIV-negative guys like you should be prescribed anti-HIV drugs but should, rather, depend on condoms to keep them and their partners safe.  Some people hold very strong views about it indeed. For example, freelance journalist David Duran has written, in an article for the Huffington Post entitled Truvada Whores, that “having unprotected sex and willingly taking that risk because you're on an easy, preemptive treatment regime is just plain stupid”. 

Len: My first reaction is - Wow! That’s a lot of judgment and shaming to respond to. Maybe I should get a t-shirt made that says “Truvada Whore” on it.  Sticks and stones may break my bones…. 

Seriously though, I wish that I could be 100% certain that even if I used a condom every single time I had anal sex I wouldn’t get HIV. I also wish that condoms could be made out of a magical material that didn’t have any texture, scent, colour or substance – but I know that not all my wishes can come true! 

But I’ve had to admit to myself that I’m not perfect at using condoms 100% of the time, and, because I’ve been working as an HIV tester and counsellor for so long, I know that a lot of gay men that I provide HIV testing to aren’t perfect either. And that’s not because we’re not trying, it’s because we’re not robots. I can also admit that condoms aren’t some invisible barrier that doesn’t impact the quality of my sex life at all. Condoms aren’t easy to use, and for me (but not for everyone), they make sex a lot more difficult. I wish it wasn’t so, but alas, it is. 

I also know that if I were to do every single thing I could possibly do to prevent HIV and STI infection I would not be enjoying sex very much at all. If I were to do only things that were “no risk” or “negligible risk” that would mean, for example, that I would have to use a condom even if I was giving a blowjob to a guy I was on a date with. It’s low risk to get HIV from giving oral sex, but when you’re having sex in an epidemic, low risk really doesn’t mean no risk. I’ve had to give HIV-positive results to guys who were certain they hadn’t had any unprotected anal sex, some of whom could even pinpoint the exact partner and blow job they’d given that had led to seroconversion symptoms shortly after. Their stories have really stuck with me, because they taught me that for guys in my world low risk really doesn’t mean no risk. I don’t really want to give blowjobs with condoms. So while statistically the risk is low for oral sex, I know that I could still end up with HIV anyway. This really made me re-think my relationship to risk and where I stood on things. And it also makes me aware that even if I’m only giving blowjobs, I still have to be vigilant about HIV because I could be one of those guys – I’ve seen it, so I know it isn’t impossible. The stress and anxiety that I was living with around getting HIV really impacted my life and it was something that affected every experience I had with other guys I was dating and/or having sex with. 

John: One of our regular contributors on PositiveLite.com, Dave R, worries, among other things, about possible resistance to Truvada, one of the most highly prescribed antiretroviral medications, developing down the road due it being used as PrEP. 

Len: The question of drug resistance is definitely a challenging one. If I ever were to test positive, I would want to be able to take the most tolerable drugs possible, and Truvada is one of those drugs. I decided that this is a consequence that I will have to deal with, and a risk that I will have to take. If anything it gives me all the more incentive to manage my risk for HIV as carefully as possible, to get regular HIV tests done, and to stick to my medication schedule as closely as possible. 

I guess the only other thing I would say again (I know I said it before) is that taking an HIV medication every day at the same time without fail is not a simple task. It really takes a commitment. But I’m really motivated to do so, because I do indeed hope to stay HIV-negative. I’m not great with routine, I’ll admit, but for me taking a blue pill at the same time every day, while difficult, is much easier than dealing with the anxiety and guilt of not being a perfect condom user. I want to stay HIV-negative, so I make the adjustments necessary to adhere to the prescription as best as possible. 

John: That’s very helpful, Len, to hear your responses to those who criticize negative guys on PrEP. Yet here in Canada, it’s not just community members who have expressed these kinds of concerns. Professionals, too, are undeniably divided about PrEP and treatment as prevention generally, arguing over whether they work or not, even though both were among the major focuses of last year’s International AIDS Conference. Why is Canada such a divided country on these things, do you think? 

Len: That’s a really difficult question to answer, John. I think that, as should be expected, nobody wants to jump the gun and start making decisions based on what they feel is not complete evidence. So scientists, politicians, and healthcare professionals may be worried that implementing a new technology, that we aren’t 100% certain of, is a dangerous proposition. 

But science will never be perfect. And as a fellow “PrEPer” Jake Sobo noted in his blog, back in the day when gay men took it upon themselves to have “safer” sex (by using condoms) rather than have no sex at all, they were doing so without evidence that condoms were 100% effective. I’m in a situation where I can’t be 100% sure I will never get HIV unless I’m abstinent, so I don’t have the same standards as scientists, politicians or healthcare professionals might – since I don’t have the luxury to. 

I understand that those who are hesitant about PrEP feel they are taking the most conservative, cautious and appropriate actions. But at the same time I feel that for me, the evidence that exists is good enough to be confident that if I do it right, PrEP can have a significant impact on my chances of not getting HIV. 

On another note, there are a number of poz guys that have taken Truvada and experienced horrible side effects of the medication. I’ve spoken to a few of them who had very strong (negative) feelings about the idea that I would take the drug if I don’t actually “need” it. I can understand where they’re coming from, for sure, but I felt I needed to see for myself if such would be the case. It turns out that for me, there weren’t any side effects – at least there haven’t been any so far. The only real effect PrEP has had so far is to allow me to be a little less guilty, feel a little bit less shame, and be a little more confident, about the sex I have. 

John: Why did you decide to talk publicly about your decision to go on PrEP? 

Len: John, I talk to a lot of gay men both through my work doing HIV testing but also socially. So I know how many of us struggle with being – or trying to be – perfect condom users. I also know that the majority of guys simply don’t know that PrEP is even a possibility, period. If I had the opportunity and privilege to read and learn about PrEP and decide if it was right for me, I felt that other guys in similar situations should have the ability to make their minds up too. I guess I just felt that it’s time we have this discussion. 

John: What would you say to other guys who are considering PrEP as part of their strategy to prevent getting HIV? 

Len: Firstly, while there are no official Canadian guidelines and even though Truvada has not been “approved” for this use in Canada, it is not illegal for anyone’s doctor to prescribe PrEP. Doctors have the freedom to prescribe drugs “off-label” if, through experience or deduction, they feel it to be in the best interests of the patient. 

Secondly, I want to make it very clear that I have gone out on a limb by seeking out and taking PrEP. I’m aware that this strategy might not completely insure me against getting HIV, and I keep this in mind with every safer sex decision I make. It’s impossible to know exactly how much of a ‘risk’ I’m taking, but for someone like myself who is having sex in an epidemic, sex without risk is more of a dream than a reality. 

Thirdly, while I am taking PrEP every single day, there might be other options in the future. For instance there is one study taking place in Canada right now that’s looking at PrEP called the IPERGAY Trial and it’s centred in Montreal. They are testing the possibility that perhaps PrEP can be taken “intermittently.” In this study, this means starting one day before you might be having ‘risky’ sex, every day while you are having ‘risky’ sex, and then for two days afterward. Other researchers are studying a form of PrEP that can be given as an injection that you get every three months, that slowly releases the drug in your body over time. So the PrEP I am using isn’t necessarily what PrEP will look like in the future. 

And last but not least, it’s important to recognize that I’m only one person with one story. That being said, I have had a unique privilege to access PrEP because of my education, occupation, knowledge, and ability to self-advocate. I’m also a white, gay guy with a university education. While I’m thankful that these have all led me to having access to PrEP, it is problematic that others don’t have access to the same information, and even if they had, they may not be able to access a prevention tool that works for them. 

My story is yet another example of white, gay guys having access to the newest technologies and information, appropriate healthcare, ability/expectation to self advocate, and so many other privileges. It is an injustice that most gay, bi and queer men, cisgendered and transgendered, are living with a healthcare system that doesn’t understand their HIV prevention needs (not to mention their larger healthcare needs), have never heard of PrEP, and don’t have family doctors. Or if they do have family doctors, they don’t feel safe disclosing their sexual and gender orientations to their doctors. And many of us don’t have access to drug plans for even low-cost medications that can make our lives better. This is especially true for the queer folks in our community who don’t have legal status and are really struggling because of it. (No One is Illegal — Toronto is a great group of people working to change that). PrEP is only one small piece of a larger puzzle that our community — positive and negative — has to tackle. 

John: Thank you so much, Len, for sharing your PrEP story with us. 

Len: My pleasure, John!  

You can read the first part of Len’s interview here and the second part here.