Len Tooley is a 31-year old, sexually active, HIV-negative gay guy who lives in downtown Toronto, where he works as a gay men's health promoter, HIV educator, tester and counsellor. As a way of helping him stay HIV-negative, his family doctor has prescribed him Truvada as a pre-exposure prophylaxis (PrEP). 

In the first part of his interview with me, which we published last week, Len and I talked about what motivated his decision to go on PrEP. This week, he discusses 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 insurance plan to cover its cost.

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John: Len, as you said last week in the first part of our interview, PrEP has been approved for use in the U.S. However Health Canada hasn’t yet followed suit. As I said in my introduction to this series of interviews, though, some physicians in Canada are prescribing it “off-label” for that purpose. How easy was it for you to satisfy your family doctor that it was okay for him to prescribe it for you? 

Len: To be honest, John, I was in a very unique situation that facilitated the process. First of all, I actually have a family doctor – and many people don’t. Secondly, he’s not only a gay family physician but he also has a huge number of HIV-positive patients. I’m lucky to be in this position because I’ve been volunteering and working in the HIV sector for a long time, and eventually found this doctor through friends. So my doctor already knew about PrEP; I didn’t need to educate him about the research showing its effectiveness. 

It’s also my job to know a lot about the science and real-world implications of PrEP, and through my work I’ve read a great deal about many aspects of PrEP, so I had a good idea about what I was getting into. I was prepared to answer any questions he had, and I knew that I was a good candidate for it. 

John: What were some of the questions your doctor had for you? 

Len: It took about four appointments for me to actually get the prescription from my doctor. The first time I mentioned the idea he told me that before we considered it, we’d have to have a lengthy discussion about what was going through my mind when I decided not to use condoms. I told him that I wished it was that simple (I’m an HIV counsellor after all), that it wasn’t as simple as a ‘yes or no’ decision, and that I could guarantee him I was trying my absolute hardest to have perfectly safe sex. I just wasn’t succeeding perfectly. 

At the second appointment (I was there for something else) I again brought up the idea of PrEP. This time he was still a bit hesitant, and told me that if he was going to prescribe PrEP I was going to have to get blood tests to test my kidney and liver functions and make sure I was HIV-negative, and then, depending on those results, we could talk about it more. I agreed, he gave me the test requisition, and that day I went to a lab and got my blood work done. 

Once I knew my blood work results had arrived, I scheduled another appointment and saw my doctor. He confirmed that I was still HIV-negative and that all my kidney and liver function tests were okay. I was pretty nervous and excited. He asked me what I’d do if I experienced the side effects of the medication. I told him that I knew that only about 5% of people in studies of the drug had reported side effects, so it wasn’t too likely, but that if I did have those side effects I’d reconsider staying on it if they didn’t go away and became intolerable. Then I told him that I knew there could be longer-term side effects, but that right now it was probably better for me to go on Truvada temporarily while I feel I’m at risk for HIV, than get HIV and have to take that drug, or other drugs, for the rest of my life. 

John: Was your doctor satisfied with your answers? 

Len: Yes, because he turned to his computer, pressed a few buttons, and his printer started whirring. He took the print-out (my prescription) and handed it to me and reminded me that even though I was taking PrEP I still needed to use condoms. 

John: When did you start taking Truvada as PrEP? 

Len: I took it the day before I started my winter holidays! So, mid-December. I wanted to start at this time just in case I noticed side effects, so I had some time to relax and deal with anything that may come. 

John: And did you experience any side effects? 

Len: You know what, John, I haven’t. At least none that I’ve noticed. It’s interesting, though, because I was so prepared for side effects that I almost convinced myself I was having some. I initially incorrectly thought that Truvada could cause really vivid dreams, so when I had a few intense dreams shortly into starting the medication I thought it must be a side effect. I learned later though that Truvada doesn’t cause vivid dreams, and that it was just a coincidence. I think I’d convinced myself I was experiencing them because I was expecting to notice at least some side effects! 

I’m about to go to the lab to get another blood test so that my doctor can see if my liver and kidneys are still working well, so I can’t speak to the “unseen” side effects. But I feel totally fine. 

John: That’s good to hear, Len. Certainly, the anti-HIV drugs that we have today are more easily tolerated than previous generations of such drugs. But being on PrEP is not as simple as popping a pill every day, is it? 

Len: It is, and it isn’t. To be honest, “popping a pill every day” is not as simple as it sounds. I know that for PrEP to be its most effective, you not only have to take it every day but every day at exactly the same time. Otherwise the levels of the drug in your body fluctuate too much and you can be more vulnerable to HIV infection. This means that no matter what I’m doing – in a meeting, at my computer, on my bike, whatever – every day at the same time I need to have my pill on me and remember to take it. Just the other day I realized that I had left my pill at home (I was at work). It was a stressful moment! I had to bike home as fast as I could to make sure I was able to take my pill. 

John: I’ve had those panic moments, too, when I forgot to take my meds with me when I left home in the morning. Clearly, it’s not as straightforward as some may think. You also need to get regular blood work done, don’t you? 

Len: Yes.  Moving forward I know that I’ll need to get blood tests every three months to make sure my liver and kidneys are functioning well and also to confirm I’m still HIV-negative. 

John: Why do you need to have repeated HIV tests if you’re on anti-HIV meds? 

Len: Because if I do happen to contract HIV while I’m on PrEP (which I feel is not too likely), the virus can quickly adapt and become resistant to the drugs I’m taking. Then they might be of no benefit to me as a drug I can take to manage the infection. So regular HIV tests are important to help prevent that from happening. 

John: On top of which, a month’s supply of Truvada is expensive! 

Len: You’re telling me! Truvada is expensive. Maddeningly so, to be honest. My eyes almost popped out of my head when I realized that it costs $871.21 each month. I’m very, very lucky to have drug coverage, and Truvada is included. If I didn’t have access to a drug plan, I’d never be able to afford the drug on my own. 

John: How do you feel about the cost of a month’s supply of Truvada and asking your drug plan to cover it?  

Len: John, I’ve struggled a lot with that question. Am I worth $871.21 per month? Or rather than me, is me staying HIV-negative worth $871.21 per month? What does it mean to put a price on your security of mind and long-term health? It was a struggle. But there were a few things that led me to decide that it was worth it. 

First of all, this is the basic concept behind drug coverage. Everyone pays a little bit into a larger pool regardless of their health status, so that when people need a prescription they have access to it. So I’ve been paying into drug plans for a long time, in case I would need access to a certain drug. And my doctor and I agreed that in order to protect my health, this drug was important. That’s what drug plans are for. Other people might use their drug plans to prevent complications of atherosclerosis or high cholesterol, or high blood pressure. Or to prevent heart burn. The list goes on and on. I didn’t feel that preventing HIV infection was really all that different. 

The second realization I had was that no matter which way you look at it, it would always be less expensive for everyone for me to stay HIV-negative than for me to become HIV-positive. Truvada is one prescription (comprised of two anti-HIV drugs), and that’s it. If I were to get HIV, I would have to take at least one other HIV drug on top of that. And this often starts a chain reaction of other medications and vitamins to help ensure overall health. I felt that the cost to everyone (including myself) for PrEP now was probably worth preventing the long-term costs that would come with getting HIV. 

Next week, in the third and final part of his interview with PositiveLite.com, Len responds to critics of HIV-negative guys like him who decide that PrEP is right for them and why he decided to talk publicly about being one of those negative guys on PrEP. 

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

In July 2012, the U.S. Food and Drug Administration (FDA) approved the use of Truvada (a fixed dose combination in one tablet of emtricitabine and tenofovir) to reduce the risk of HIV infection in uninfected individuals who are at high risk of HIV infection and who may engage in sexual activity with HIV-infected partners. This use of an anti-HIV drug to prevent infection is known as pre-exposure prophylaxis (PrEP). 

PrEP is considered by most observers to be a major breakthrough in the war against HIV transmission. In Canada, however, there’s no indication that we’ll follow the American lead any time soon. Experts, and indeed many in the HIV community, argue about the desirability of doing so. 

However, some Canadian physicians are already prescribing Truvada “off-label” as PrEP for some of their patients. Len Tooley is one patient of such a physician. He agreed to talk to PositiveLite.com about his decision to go on PrEP. 

In this series of three interviews, Len and I talk about his decision to access PrEP, his experience starting to take PrEP and how he responds to critics of negative guys like him who decide that PrEP is right for them. 

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John McCullagh: Len, thanks for agreeing to talk with PositiveLite.com about your decision to go on PrEP. Before we get started, can you tell us a little bit about yourself? 

Len Tooley: Sure, John. I’m a 31-year-old queer guy who lives, loves, cooks, cycles, and works in downtown Toronto. I also work professionally in the HIV sector as an HIV-negative guy. In that regard I work as the coordinator of community health promotion programming at CATIE, Canada’s national HIV and Hepatitis C knowledge broker. At CATIE I coordinate a number of projects related to gay men’s sexual health. In my spare time – if you could call it that — I also work part-time as an HIV and STI tester and counsellor through Hassle Free Clinic, a sexual health clinic in downtown Toronto. 

I mention what I do professionally because it’s given me the opportunity to learn a huge amount about HIV and gay men’s health that has really informed my decision to access PrEP. That being said, I should make it clear that I decided to do this interview with you as an individual telling my own story – I’m not speaking on behalf of either organization but rather as someone who is affected by HIV. 

John: Thank you for that clarification, Len. In that regard, I should also mention that I’m a member of CATIE’s board of directors. So let’s start with the obvious question: Why did you make the decision to go on PrEP? 

Len: First and foremost, John, to prevent HIV infection. I have a tricky relationship with HIV. I know that given the proper treatment, medical care and social supports it has become a pretty manageable illness that doesn't have to drastically change someone's life. Of course, that's not at all to say that being HIV-positive is easy or without complications, but it is different from even a decade ago. By different I mean in terms of the treatments available and long-term health outcomes — especially if the infection is caught and treated early. So, while I know that getting HIV doesn’t have to be the end of the world, I also know that it’s probably easier and better for my body overall to stay HIV-negative. 

As I mentioned, I’m a relatively young, sexually active queer guy who has sex with gay men. And I'm doing so in downtown Toronto, which has the highest prevalence of HIV among gay men of any urban centre in Canada — as high as 23% according to the best sources we have to date. To me this means that it's almost certain that I have had, and will have, sex with HIV-positive guys. As I've learned through providing HIV testing, and as more and more evidence is showing us, when you’re having sex in an HIV epidemic almost everything you do sexually — even low risk activities like giving oral sex without a condom — has an added risk for HIV infection. 

John: “Having sex in an epidemic”. That’s an interesting way of expressing the risk we gay guys run when we have sex. Can you talk a bit more about that? 

Len: Sure. One of the main reasons I say that is because of the way we know HIV moves among men who have sex with men (MSM). Studies show that anywhere from 50-75% of new HIV infections among MSM in Canada every year are driven by people whose HIV infection is also recent (what we call early or acute HIV infection). That's because when someone is newly infected with HIV they're less likely to know about their status. At the same time, they have the highest levels of the HIV virus in their body fluids because their body has not yet developed any ability to control the virus at all. 

So I know that even if the guy I'm having sex with says he’s HIV negative, there’s always a chance that he's not only positive, but that he also recently got HIV so he’s very likely to pass it on as well. It's in these 'perfect storm' scenarios that lower-risk activities (which, we must remember, are not 'no risk' activities) are much more likely to enable HIV transmission. In other words I know that even if I’m having 'low-risk' sex, I’m more likely to get HIV than most people. 

John: For almost thirty years now, most gay men have known that the most reliable way to prevent HIV transmission, even in an epidemic, is for us to wear condoms, at least when we have anal sex. So why did you decide to take PrEP too? Isn’t this a little like wearing a belt and suspenders? 

Len: Ha! To be honest with you, John, I’m not perfect – even if I wish I was. And I have to admit, I haven’t had perfect condom use throughout my life. I’ve managed to stay HIV-negative for quite a while, but this was partly a combination of “responsible” condom use and – when “not-so-responsible” – luck. Those moments when I had done something that I knew might put me at higher risk often led to a lot of anxiety. Not constant, overwhelming anxiety, but one that prevented me from feeling good (meaning, guilt free and shameless) about the awesome sex that I had had. 

John: So taking PrEP would give you added protection from HIV on those occasions when you might find yourself in such a situation? 

Len: Exactly. Working in the HIV sector I’m fortunate enough to be aware of the newest advancements and research going into HIV treatment and prevention. I’d been reading about PrEP and how, even if it’s not a ‘guarantee,’ it’s been shown to be quite effective. But it hasn’t been approved in Canada so it seemed like an impossible, or at least unlikely, tool. Early last November, during one of my more anxiety-filled days thinking about what I might have done since my last HIV test that might have exposed me (even though “I should know better”), I thought – wouldn’t it be great to have PrEP? And then I realized it was totally possible. That all I needed to do was to convince my doctor to prescribe me the drug. My confidence was bolstered by the fact that the U.S. FDA has already developed guidelines for prescribing PrEP to gay men. I read a really helpful resource by Project Inform that helped me make the decision too. 

But beyond my own risk, there’s another set of reasons for me to choose to access PrEP: the positive guys in my life that I have had, or will have, relationships and/or sex with. From doing testing and knowing a lot of positive guys, I know that for many of them passing HIV on to someone they’re having sex with is something they want to avoid at all costs. Sometimes this leads them to only dating or having sex with other poz guys. For me, PrEP is a way that I can not only take responsibility for my own sexual health (and the sexual health of my community), but it’s also something I can do to help reduce the fears and anxieties that some poz guys have around transmitting HIV to someone else. 

I also understand that it can be really hard for some poz guys to disclose their status to negative guys, and I hope that my being on PrEP can make those guys feel more comfortable disclosing their status to me. I also hope to help create an opportunity for more honest and open dialogue about our safer sex decisions. 

Next week, in part two of this interview, Len talks about the conversations he and his family doctor had about going on PrEP and his experience of actually taking Truvada as a way to help him stay HIV-negative.

Hello PositiveLite.com readers.

In 2013 I have made a decision to move on to other writing assignments as I am forging ahead to chart a different paradigm and journey for myself. I was offered a spot to write for the blog at thebody.com.  After much mental processing I have accepted the offer to write for them. Secondly I have also set up my own personal blog. The title is called: Follow Your Bliss and it’s here.

I’ve been with PositiveLite.com since its conception in 2008-2009. Through most of my life experiences I view events and social discourses in a different light. As an individual who has always analysed many issues from a global and international critical analysis I have never understood some of the navel gazing that happens in the HIV or gay/queer communities in Toronto. From a critical analysis, I have little tolerance for the whining, doom and gloom of new infected persons in Canada - a resource rich setting. Get a grip. It is 2013!   

My perspectives in life stem from a different lens. It includes my upbringing, country of origin, religion, culture, values, goals and how and if, it integrates with the “Canadian” culture, values and goals. As a racialized and queer person, I am always negotiating my space in this city, country and world as I travel.  

Right now I am in the thick of my M.Sc. dissertation on the Effect of Complementary and Alternative Medicine on Quality of Life for HIV-Infected Individuals on HAART: A Mixed Methods Research. I realize I will be one of the few graduates and people living with HIV who is researching CAM use within the HIV infected peer population.

In forging ahead, I am planning a few goals in the near future such as post graduate studies. My writing at the two sites will focus on global LGBT issues, cultural norms and dichotomy, environmental and animal rights and controversial issues such as the misogyny in gay culture and hyper-masculine obsession in gay men’s culture. My blogs will not be on HIV per se as I have always believed my life does not revolve about HIV or around HIV. HIV is one part of my being, not all of me. In my opinion, it is not good health promotion technique to be immersed in HIV 24/7. HIV is not going anywhere; I chose to minimize the co-independent relationship.

You can always connect with me via the body.com or my personal blog. Or you can Google me and get hold of me.  Many blessings stay well and healthy. All the best in 2013 and the future!

Another Friday night and here I sit home alone. Just a phone call away is a very hot guy waiting for me to spend the weekend with him for some intimacy and hopefully good sex. I am conflicted because I know the moment I disclose my HIV status this insatiable attraction he has for me will come to an abrupt end.  Should I enjoy this feeling of being desired for a while longer before the inevitable? (Anyone having been in this situation knows exactly how I feel).

I have experimented with disclosure in many scenarios, on numerous occasions, including a waiting period to get acquainted and develop a relationship before disclosing. Now my preferred method is to disclose after a relatively short period of time as we get to know one another and always before meeting in person. That way I feel more proactive in being emotionally self protected from rejection in person, in control as I will ever be of the situation, while giving the person the opportunity to educate themselves about HIV, in advance, if they decide they want to meet me.

After disclosing I have heard far too often over the years a few standard  escape lines such as –“ I suddenly have to work this week-end”, “let me call you right back”. In so many words some of them bolted. Others were initially shocked by the news and felt in order to be politically correct, or being just plain out of control horny, they had no problem with my HIV status, until after the sex, when they frantically doubted the safety of condoms, questioned the need to get tested for HIV immediately  and just about everything else about me, which was not a concern before disclosure, including accusatory speculations about –“ What exactly did I do and what shady past do I have to be infected with HIV”. 

The hot guy waiting for my call has been looking forward to a possible meeting on the weekend as he said I was sexy, attractive,  interesting, intelligent, a bit eccentric and somewhat innocent and naïve,  in a good way, and he hadn’t felt so refreshed and  excited like this in a while. He most likely will feel devastated in this disclosure process as the others did, although there is no need. The others did not stay long enough to hear why it is not so scary. They heard HIV and panicked as he is likely to do, based on my past experiences.

I could share more experiences with disclosure and negative reactions. However now that I shared the incongruity in disclosure what needs to change is the public’s perceptions of people living with HIV. When fears are alleviated and stigma de-mystified, reactions to disclosure will change to acceptance and tolerance of people living with HIV with a state of HIV neutrality. As we are collectively impacted by the disclosure process, a collective effort is called for involving a continued effort to educate and the beginning of an effort to being educated about HIV realities.  Simply stated, there is no need to bolt when a person discloses their status.   Stick around, get to know us, learn about HIV. The attractive qualities are still there.

This all sounds  unrealistic with a lot of wishful thinking as I have observed over the years how insidiously dating terminology has changed to culminate into one’s right to  include such terms as “clean” and “disease free” in seeking a partner, which translates into “Stay to hell away if you have HIV”.

Now, for the million dollar question-  Will the hot guy still want to get together for some fun on the week end after I disclose? I doubt it, but I continue to have hope and I continue to disclose to move the process forward.

Submitted by the HIV Disclosure Project. You can follow them on twitter at @sexpartnersHIV or on Facebook here. 

The Campaign:

This is a campaign inspired by Chelsea Clinton raising awareness by holding a simple sign for the Global Fund to Fight AIDS, Tuberculosis, and Malaria. My vision for this campaign is to mobilize people in places across the United States and the World willing to stand up to Stigma and Rise Up To HIV, all in an effort realizing the UN Goals of getting to ZERO. The biggest barrier, I believe, to realizing these goals is STIGMA.

What is Stigma?

We hear this word thrown around A LOT, but do we all know what it is? AIDS-related stigma and discrimination refers to prejudice, negative attitudes, abuse and maltreatment directed at people living with HIV. The consequences of stigma and discrimination are wide-ranging: being shunned by family, peers and the wider community, poor treatment in healthcare and education settings, an erosion of rights, psychological damage, and a negative effect on the success of HIV testing and treatment. (ref: Avert.org – read more)

How to Join the Campaign

On Facebook: simply tag RiseUpToHIV with your photo and a sentence or two about yourself, or a bio if you have one.  Visit the event page to see who else is participating, and you may visit the facebook album of folks who have already submitted a photo.

On Twitter:  You can tweet an image and sentence to @RiseUpToHIV

If you are good with Photoshop or any other editing software you may submit a photo of yourself with the words No Shame About Being HIV Positive.

If you are not on Facebook or on twitter you can mail your photo to This email address is being protected from spambots. You need JavaScript enabled to view it. and I will be sure to place it in the album here

Expanded purpose and vision

As stated. the purpose of this campaign is to play a role in the overall HIV community in an effort to reduce stigma by mobilizing people and engaging them in communities across the World to Rise Up To HIV by proclaiming there is NO Shame About Being HIV Positive!  How will this be accomplished?  Through the power of social media, and through an army of caring and compassionate individuals, either infected or affected by HIV/AIDS who choose to take part in this campaign. ASO involvement in this campaign is strongly encouraged.

For as long as stigma exists, and I am alive, and the web still exists this campaign will carry on, evolve, grow, and hopefully do some good in the process, and in the end you will have helped make this campaign the success I know it will be! The sign campaign is the first phase, in a three phase approach. Details to be forthcoming in the coming weeks/months. 

Proposed Outcomes

To get people talking about HIV/AIDS again – in schools, at the dinner table, in the car, on the radio, TV, and all throughout social media and with foot soldiers on the ground. We need all hands on deck if we are going to finally realize the end of this epidemic.  This campaign will identify and mobilize individuals making a difference in their communities.  It’s been know that when you are engaged in your own care, you’ll engage others, which will in-turn create healthier communities.

This is not the first Anti-Stigma campaign, and certainly won’t be the last. I have seen some amazing campaigns doing good things in communities across the country and across the web since finding out my diagnosis nearly 3 years ago.  In my opinion not enough awareness and education campaigns can exist to tackle this issue.

Are you currently facing STIGMA?  Well know this!

You Matter, your life matters, and you are filled with purpose! You are no less of a person because you have HIV, and if treated, and you stay on treatment you can live a very normal and productive life (like many you see in the photos in this campaign). You can still dream big, and live out those dreams (your dreams are not infected).  Don’t let HIV take away your power, instead become empowered and Rise Up To HIV. 

It’s what I did; it’s what’s gotten me through. There is no greater feeling or power then to be able to stand up to your fears, to not be kidnapped by your illness, to be amongst people who understand, to be knowledgeable or gain greater understanding of something you may have thought you had no control over, but you do.  Rise up to HIV and help end the stigma! 

I am also seeking stories of people in the World who are facing stigma. Where in the World are you and what stigma/discrimination are you facing? E mail your story to This email address is being protected from spambots. You need JavaScript enabled to view it. – stories will not be published, unless you want it to be and want the world to know. 

Thank you for your participation in this campaign, 

Kevin Maloney

Founder: RiseUpToHIV 

Supported by Community Access National Network, a National 501c3 that has been dedicated to improving access to care and treatment for people living with HIV/AIDS and Hepatitis C since 1996 

Media Contact: Kevin Maloney 

202-290-2019 

E mail: This email address is being protected from spambots. You need JavaScript enabled to view it.