In April 2012 I wrote a piece for PositiveLite.com entitled “My Barebacking Journey”. In it I talked about how I had made the decisions not to use condoms since my college days and how this had ultimately led to my testing HIV positive in September 2011. 

A year later, I thought I’d take the opportunity to sit down and put my thoughts over how things have gone over the last 12 months.  Some things have changed dramatically, others haven’t changed at all.  I guess in some respects life is just carrying on just the same as it always has. 

Since I wrote here last, I have come out as an HIV-positive person to nearly everyone I know. Only my parents and immediate work colleagues are in the dark. I managed the “coming out” process carefully; telling a few people, gauging their response, and then telling a couple more, until the deed was done. Surprisingly, for a city of its small size, the public reaction to my condition has been overwhelmingly supportive. Not one person has reacted negatively to it, and the gossip has largely been low key. People whenever I see them, ask me how I am doing, and it has really shown me that the people I call friends really are friends, and I am honoured to have them in my life. 

In November 2012, after my viral load reached a peak of 1.7 million, and my CD4 flicked a margin above the 350 threshold, I took a week off work to start my HAART medication. I was prescribed Truvada and Sustiva, with a view once the viral load was fully suppressed to move on to Atripla.  In order to get a week off work in order to manage any side effects at such short notice, I decided to inform work. After careful consideration of the pros and cons of taking such a step, I decided that it was the right thing to do. I didn’t actually have to say it as it turned out – my manager asked me for a private word and turns out he had guessed it. I suppose a sexually active gay man, talking about having a medical condition which requires a lifetime of medication, kind of drops the hint – and he had put two and two together.  

The reaction I got from him has been fine. No issues whatsoever, and as a result of him being informed of my condition, he has allowed me time off at short notice to attend the clinic for blood tests and regular check ups – something that would have been hard for me to do had he not been aware of the situation. What is more, he has kept it to himself, and not blabbed it to all my work colleagues, so there are no issues there either. 

The question I get asked most now I have started the medication, is how is it going? What about side effects? 

Well the first couple of weeks were a mixture of horror and bizarre experiences.  I wanted to experiment with the drugs – to see how they would impact on my normal life. So I ate my usual meals, drank a few beers before taking them and all that jazz. The first time I took them with beer was like nothing on this earth. I had a couple of pints then popped my pills. Within half an hour, I had gone from merry to totally blotto. I said goodbye to my friends, and staggered home. What normally takes me 20 minutes, took me one hour to walk. I fell through my door, passed out on the sofa with the room spinning! It was as though I’d had twenty pints, not two. A very peculiar experience, it made for a cheap night though! 

Over time I got fed up with not being able to enjoy a couple of quiet beers after a 14 hour shift at work, and it came to a head just before our works Christmas dinner. I spoke to my consultant, and he informed me that I didn’t have to take them at exactly the same time each night; if I wanted to take them immediately before I went to bed, within a four or five window period each night, that would work just as well. So this is what I did, and continue to do. 

I lead life just as I always have done; the only difference is that before I go to bed, I chomp down on my HIV medication. Sure, sometimes if I’ve eaten late at night, the medication triggers some strange vivid dreams, but truth be told, I quite like them! They’re not scary, and on the whole, are very enjoyable experiences. 

More importantly, the medication is working. Within 5 months of starting my treatment, my viral load has gone from through the roof, to undetectable and my CD4 is on the rebound.  I feel more energetic that I have at any point since my diagnosis back in September 2011, and I know that provided I keep taking them, and they keep working, then there is nothing to worry about.  HIV isn’t a death sentence any more, it is a life long chronic, but manageable condition.  I think this is the most important message that we need to get out there people who are recently diagnosed, or whom are living with the virus, but not on treatment.  Especially with the continued debate over treatment as prevention – something that I am a strong advocate for.  

However life on HIV treatment isn’t all smooth. Over the months, I have noticed an alarming development. It would appear that I am losing my libido. I have a far lower interest in sex now, than I did before I started HIV treatment. It’s not that I have HIV, as even after my diagnosis I was still an exceptionally horny guy. I still get my moments, but when I look back to how I used to be, the libido has certainly waned since starting HIV treatment. This isn’t a universal issue though; friends of mine on treatment have found their libido actually increased.  It’s clearly something that I need to continue to work through with my medical team. 

So what else has the last year brought? I found myself in a relationship, something that hadn’t happened in a very long time. It was nice; we met in a bar, and things quickly moved onto more, it was during a night out together that I realised I had the dreaded disclosure to do. I plucked up the courage, and told him that I had something to tell him. As with all my friends, his reaction was great. He said that he knew the risks, he knew other people in the city who were HIV positive, and it didn’t faze him. Sadly it wasn’t to last, only a fortnight ago we broke up after three months together. He said that it wasn’t anything to do with the HIV, but as these things go, it always leaves that lingering thought in your mind. Still, such is life, we live and learn and move on. 

Over the course of the year since I last wrote for PositiveLite.com, there have been moments where I wished to the high heavens that I didn’t have this condition; I would be lying if I said otherwise. On balance however, I think that it has made me a stronger person for it. It has given me a greater appreciation of my health; I take a more active role in keeping myself healthy, I’ve cut out the junk food and eat more fresh fruit and vegetables. I drink less alcohol and more water.  As I am an out and proud HIV positive person, I also tackle stigma head on when I hear people talking rubbish in the circles that I socialise in. I strongly believe that it is only by being out and open about our statuses, can we eventually reduce stigma of the condition. If we sweep it under the carpet, or are ashamed of it, then stigma is allowed to grow and rear its ugly head. 

That’s about it really; my thoughts of living with HIV are as they have always been. It’s something that I live with, not suffer from. My journey over the last year, of coming out as an HIV-positive person has led me to meet many other people I already knew who are also in the same position, and I take strength from them, and hopefully them from me. 

You can follow Josh on twitter at @JoshLandalexxx. 

The “Breast is best” mantra has become the chant pregnant women and new mothers hear, and it’s no surprise- breast milk is amazing stuff. Breastfeeding helps build a child’s immune system, develop healthy gut flora, and prevent allergies, obesity, asthma and SIDS.  It also boosts a baby’s brain power. But as we learn more about how breastfeeding contributes to infant and child development, women who can’t or are advised not to breastfeed for medical reasons can be profoundly affected. A couple of pieces I read last week brought the issue up again.   

HIV and Breastfeeding - No

HIV is present in breast milk, so women with HIV who live in areas where clean water supplies are available are advised to formula feed to avoid transmission risk. This can be complicated for women with pressure from surrounding friends, family, or social norms that they will breastfeed. This tension was presented in a study of women of African descent living in the UK. It was shared recently at the British HIV Association conference.

Twenty-three women with HIV (pregnant or new moms) took part in a study to discuss their feelings about breastfeeding. Having been raised with the expectations that mothers breastfeed, they felt that breastfeeding was “an essential aspect of being a woman and a mother.” Roger Pebody’s coverage of the study also noted that these feelings were echoed by women in a Canadian study last year.

For women who haven’t disclosed to people in her circles, fear of discrimination and judgment loom large. The pressure to breastfeed could feel enormous. Women in this situation reported they often isolated themselves and their babies.

HIV and Breastfeeding - Yes

Pebody’s piece also reported on confusing health education women receive. Breast IS best for women with HIV when there are no dependable clean water supplies. In these situations, the risk of water-borne illness to babies outweighs the risk of HIV transmission from breast milk, and positive moms are advised to breastfeed exclusively.  There should be no use of formula at all (using both breast milk and formula is called mixed feeding). On top of putting an infant at risk for water-borne infections, formula can cause inflammation in an infant’s gut, which can open the way for HIV infection.

Refer here. 

Another piece breastfeeding women need to know about is weaning. It looks like transmission risk is more about how a woman weans than when. A study of 958 women showed that levels of HIV in their breast milk increased when they weaned abruptly when their babies were four months. In women who continued to breastfeed, those who did so exclusively had lower levels of HIV in their milk than the women who didn’t exclusively breast feed. This research indicates the benefits of exclusive breastfeeding past four months of age, and reinforces the importance of good health support and education for women.

Refer also here. 

This article first appeared on the website of Positive Women’s Network here. 

Toronto, Canada – A Tanzanian youth, with links to a Toronto-based charitable organisation, was today announced as having created the winning logo design for AIDS 2014 - the 20th International AIDS Conference – being held in Melbourne, Australia in July 2014. This follows a global competition for youth aged between 10 and 30 years old launched by the International AIDS Society. 

Yohana Haule (21) is a young artist who has been working with the organisation Africa’s Children-Africa’s Future (AC-AF) since October 2011 through their office in Dar es Salaam. AC-AF first met Yohana at his secondary school graduation. Current Executive Director, Dave Christie and founder of AC-AF, Gita Jaffe, were attending as guests of the school and another youth in their programming. Drawn to Yohana’s talent, he would become the first recipient of the AC-AF Youth Leadership Award. The award looks to strengthen the youths’ skills to develop promising talent into concrete actions that can help the youth achieve their dreams. Since then, he has become the resident artist for the organisation, producing artwork used in programming resources for children and in awareness materials currently being used in Canada.

As Christie explains, “This is an incredible achievement for a young man from Dar es Salaam who, like many youth in Tanzania, has faced many hardships to get to where he is today. When we first met Yohana, we were not only struck by his talent, but by the messages that he was portraying through his art. One of the first images he showed to us was a depiction of the roles women play in Tanzania – both in the strength they bring to the country but the burdens they also face. In Sub-Saharan Africa, the burden on women in the AIDS epidemic is particularly harsh, and here was a young man willing to confront some of those issues.”

Toronto has strong links to the International AIDS Conference having hosted the 16th conference in 2006. As a legacy to that conference, the Global AIDS Initiative was established by the City of Toronto, to fund programming concerning HIV and AIDS undertaken by organisations working in sub-Saharan Africa. For the last two years, AC-AF has been part of the coalition of organisations utilising these funds for its work in Tanzania with children and youth. As a result of the budget passed in January at City Hall, this funding will end in August 2013. Although the financial legacy of AIDS 2006 is coming to an end, the work that the City of Toronto has enabled AC-AF to undertake, including with Yohana, will ensure that the contribution of the people of Toronto will have a lasting impact on AIDS 2014.

For AC-AF, this provides a moment of pride in the accomplishments of the youth they work with. At the heart of their programmes and ethos is a continual focus on the potential of children and youth. As Christie explains, “Our programming does not look to just help children; it is aimed at ensuring children and youth help themselves, both now and in the future. They need encouragement to increase their independence, ensuring that they can support themselves, their families and their community, while fulfilling their dreams. Yohana exemplifies this. Although we are able to provide him with some of the initial opportunities, it is ultimately his effort and talent that has brought him this recognition by the International AIDS Society.”

Yohana will continue to work with AC-AF before travelling to Australia in July 2014 to be officially thanked at the conference for his design. This will be the first time that he has travelled outside of Tanzania.

For more information about Africa’s Children-Africa’s Future (AC-AF) visit: www.ac.af.com.

For more information about the AIDS 2014 conference visit: www.aids2014.org.

This report by Gus Cairns first appeared on aidsmap.com here. 

The US National Institute of Allergy and Infectious Diseases (NIAID) has announced that it is discontinuing the HVTN 505 HIV vaccine trial. This trial, which started in July 2009, has involved 2,504 gay and transgender volunteers in 19 US cities. Since the successful conclusion of the RV144 vaccine trial in September 2009, HVTN 505, as a randomised, placebo-controlled phase IIb trial, has been the only ongoing HIV vaccine trial large enough to be a true test of vaccine efficacy.

NIAID stopped administering injections when the trial‘s independent data and safety monitoring board (DSMB) found during a scheduled interim review that there was no sign that the vaccine regimen was preventing HIV infection, nor any sign that it was reducing viral load among vaccine recipients who became infected with HIV.

The DSMB found that there were actually more HIV infections in volunteers receiving vaccine than placebo, but it is important to emphasise that this difference was not statistically significant and may have been due to chance. Statistically speaking, the vaccine had zero efficacy.

The HVTN 505 study was testing an investigational ‘prime-boost’ vaccine regimen developed by NIAID’s Vaccine Research Center. It involved a series of four injections. The first two, at the start of the study and four weeks later, consisted of a length of DNA – artificial genetic material – that ‘coded’ for proteins found on the surface and inside the HIV virus. The idea was to sensitise the immune system to the specific HIV genetic sequences.

The third injection, at eight weeks, involved a vector. This means the same HIV genetic material was wrapped inside the shell of a different virus, an adenovirus, one of the types that cause common colds. In this case the viral shell was altered so that it could not cause illness. The idea of a vector is that it causes a ‘fake infection’: the viruses can carry the genetic material through the cellular membrane and into the interior of immune-system cells. The two investigational vaccines tested in HVTN 505 cannot cause HIV infection because neither contains live or weakened versions of HIV.

The reason behind a prime-boost design is that it is thought to be the best safe way to stimulate both branches of the adaptive immune system: antibodies, which stop viruses getting into cells in the first place, and CD8 cells or cytotoxic T-lymphocytes (CTLs), which kill off virus-infected cells. Researchers hoped that if a prime-boost vaccine were successful, it might prevent infection altogether in the majority of people, but in the minority who were still infected, it might kill off enough virus-infected cells to permanently contain HIV replication and produce a consistently low HIV viral load.

The fourth injection, at 24 weeks, involved an injection of the viral vector alone, without any HIV genetic material. This was to gauge the level of immune response to the adenovirus shell rather than to the HIV material it contained. This is important because in one of the previous vaccine efficacy trials, the STEP study, the vaccine actually made people with high levels of pre-existing immunity to the adenovirus vector more, rather than less, vulnerable to HIV. In the case of HVTN 505, volunteers were required to have no pre-existing immunity to ad5, the adenovirus vector used.

In its April 22 interim review, the DSMB looked at volunteers who were diagnosed with HIV infection after having been in the study a minimum of 28 weeks and found that 27 HIV infections had occurred among the vaccine recipients and 21 among placebo vaccine recipients. Twenty-eight weeks was chosen because by this time the vaccine, if it worked, would have stimulated a sufficiently strong protective immune response. Including volunteers who had become infected less than 28 weeks after enrolment, there were 41 cases of HIV infection in volunteers receiving vaccine regimen and 30 cases in those receiving placebo.

Additionally, the DSMB found that viral load among the 30 volunteers who acquired HIV infection at least 28 weeks after entering the study, and who had been followed for at least 20 weeks after diagnosis, was no lower in vaccine than in placebo recipients. Study volunteers are being asked to report to their specific clinic sites over the next few weeks to find out whether they received the investigational vaccines or placebo. Individuals who became HIV-infected during the trial were referred to local services for appropriate medical care and treatment.

The HVTN 505 study will continue follow-up with study participants to further evaluate the trial data, and especially to see if the greater number of vaccine recipients who were infected is in any way significant.

For more information about the HVTN 505 study, please see the updated Questions and Answers page here.

To learn about what other vaccine trials are currently taking place, visit IAVI’s vaccine database here or AVAC’s summary here.

On April 5, 2013 I took my first dose of Truvada as pre-exposure prophylaxis (PrEP). 

So many questions were swirling in my head at that point, and had been for weeks and months. As I was about to swallow my first pill, I gazed outside the window and wondered…

• How did I end up in this situation where I feel like I need PrEP?

• How is it possible that it was this easy for me to access PrEP when so many people don’t have access to ARVs to stay alive?

• How did I go from being a major PrEP skeptic 4 years ago to actually taking PrEP now?

• What would people think if they knew I was taking PrEP and therefore by implication putting myself more at risk than I’d even been willing to admit to myself?

• Will I be taking this pill every morning for the rest of my life?

• Will I start taking more risks than I did before?

• Will I experience side effects?

• When will this damn winter end? I know this is Canada and everything, but enough already with the grey skies and slush and dreariness.

To find clues about how I got here and how long I might need PrEP, I took a sexy stroll down memory lane. Or as I like to call it…

My Sex Life: A Tale of HIV Risk in Five Phases

Phase 1: “In the Beginning”, lasted 8 years. I grew up in Moncton NB, (right) a small town on the East coast of Canada, and stayed there until my mid-20s. Let’s just say there were not very many opportunities to participate in activities that would have put me at high risk. This was pre-interwebz and smartphones, folks. In a town with one gay bar. I don’t do bars. Ever. All my experiences were very low risk. I didn’t even want to experiment with high risk behaviours. I was much too scared. I watched my father, an out gay man, progressively get sicker and eventually die of AIDS, desperately gasping for breath in his last hours, right in front of my eyes. I was 18 when we learned he already had AIDS and he died when I was 20. Trust me, this leaves an indelible impression on a young gay man who is just beginning to have sex, and who has not even come out yet. I did come out very shortly thereafter, and I ended up in a long-term relationship pretty much immediately.

PrEP would have made no sense for me then. I didn’t even need condoms. That would come later.

Phase 2: “Spreading my Wings”, lasted 9 years. I moved to the Ottawa/Gatineau region where I still live now, a sprawling metropolis compared to what I’d known until then. I was here by myself for a while. I decided it was time to explore and play around. Even after my partner joined me. But I was still not at high risk for HIV. This was largely because I was frankly uninterested in activities that would have put me at high risk. Partly out of personal preference. Partly out of concern about “bringing something home” to my partner (oh ya, I was suuuch a considerate adulterer!). Partly because at this stage my fear of getting HIV still considerably outweighed any desire to do anything even moderately risky.

PrEP would have made no sense for me then. I didn’t even need condoms. That would come later.

Phase 3: “Letting Loose”, lasted 1.5 years. After the end of my 14-year relationship, I decided it was time to explore and play around even more. Not that I’d been an angel before. Far from it. But now I was ready for some adventure. Through it all, I can honestly say that I managed to maintain absolutely 100% condom use. Each and every time. How did I manage that? For one thing, while my fear of getting HIV no longer outweighed my desire to explore activities that happen to be more risky, it still was strong enough to reinforce my resolve around condom use. It also helps that negotiating, convincing, or cajoling are rarely required when you’re almost always the one actually wearing the condom.

PrEP would have made very little sense for me then. That would come later.

Phase 4: “The Dark Ages”, lasted 1.5 years. Through a very severe depression, there was nothing going on. Nothing.

PrEP would have made no sense for me then. I didn’t even need condoms. That would come later.

Phase 5: “The Renaissance”, lasted 5 years. I was back to a life of adventure as a single gay man in a mid-size city, and on very frequent travel. At first, I still managed to maintain 100% condom use. But gradually, over the course of the last 2-3 years, I started to veer away from 100% condom use for reasons that I will explain in my next installment. As a sneak preview—it has to do with the current state of knowledge about HIV transmission, and, well… because sex feels better without condoms! *GASP* Stay tuned for the shocking next episode.

So now, for the first time in my life, at the age of 43, and after 25 years of active sex life (minus a brief depression-induced hiatus), PrEP makes sense for me. How long will this new phase last? How long will I be on PrEP? I don’t know. But luckily it exists and I can access it.

***

There are a million other things I have to say about PrEP. Well OK, maybe only half a million. But luckily others have already addressed many of them, and have done it so eloquently. I encourage everyone to check out the following remarkable first-person accounts:

• Len Tooley did a series of interviews on PositiveLite.com.

• Jake Sobo has been writing a whole series of articles on his blog, “My Life on PrEP”.

• Several other first-person accounts can be found right here on the “My PrEP Experience” blog.

Len and Jake are so friggin’ smart and insightful and articulate, I want to marry both of them. It has been a tremendous source of help and support to read the thoughts of everyone who shared their stories publicly. A big hairy thanks to Jim Pickett for starting the “My PrEP Experience” blog because he recognized that amidst all the heated debates and discussions and policy decisions about PrEP, we weren’t hearing the voices of real-life flesh-and-blood people actually using PrEP.

To be continued. . . 

About the author: Marc-André LeBlanc has worked in the community-based HIV/AIDS movement for 20 years.  He does community engagement, capacity-building and policy work related to biomedical HIV prevention research, both in Canada and globally. He is a co-founder of International Rectal Microbicide Advocates (IRMA), serves as secretary on their steering committee, has authored two reports on the global state of rectal microbicide efforts, and leads IRMA’s global efforts to ensure the safety of sexual lubricants. Marc-André loves movies. He got a film studies degree while working full-time, just for the sheer fun of it. He is now leading advocacy efforts to get ice cream and popcorn recognised as new basic food groups in Canada’s Food Guide

This article first appeared on My PrEP Experience here.