I first met Spike fourteen years ago. And although he wasn’t the first person I met who told me he was positive, he was the first person I met who told everyone he was positive.  I remember thinking it was a very brave thing to live as an OUT poz man.  For Spike, though, it wasn’t about bravery.  It was and is about integrity.

We caught up recently so I could ask him some questions for this series of articles on HIV Heroes. Spike was diagnosed in May 1987.  At that time a lot of his friends had also been diagnosed and he told me that although he cannot pinpoint when he got the virus, it was not unexpected, having lived through the years when the only thing to worry about was the clap and crabs. He comes from a generation that had no reason to practice safer sex.

I have often heard him described as an activist and wanted to know if that’s how he viewed himself. It is not a moniker he sought but he has always been very vocal, and if he sees something he feels is wrong he will make a lot of noise to try and make good on a bad situation. He hates to see people be attacked or made to feel insignificant  - and having been around in the dark years it’s just that his own personal morals kick in.

Back in the early years, he was working in a pub in the East End of London, and in the community there was a lot going on to try and raise awareness and money for a variety of projects. He was telling me that when people were diagnosed back then they seemed to do one of two things, fight and try to help or choose ‘death by duvet’. The life expectancy back then was so short that a lot of people gave up. Some chose to make a lot of noise and help. It comes as no shock to me that Spike was at the centre of the noise-making.

He started to produce benefit drag nights at the pub he worked in, rounding up and then directing performers. These fundraising nights were a huge success and helped towards projects such as the Mildmay UK and the buy a brick to build The London Lighthouse campaign.  Spike himself is an actor and put his drama experience to good use to galvanise the community to help, at the same time making it entertaining.  In all the time I have known Spike he has been a firm supporter of not giving into doom and gloom.

There are so many things I could tell you about that Spike has been involved in but I will skip to what I think is the biggest. Spike was one of the original team to set up Positive Nation which at the time was revolutionary in raising awareness and campaigning for social justice. They continue to this day to be active. In 1996 he along with a few friends from Positive Nation approached the London nightclub Turnmills with a proposal to run a night at the venue. The night was to be called Warriors and was to be run by men with HIV. Although not exclusive to a clientele who were HIV+, it was very much known to be a place to go if you were. The innovation and balls required to set up (successfully) a club night such as this is phenomenal.

The club ran for two years and part of the profits was donated to a variety of HIV charities. It happened at a time when London clubbing was legendary, and people flocked to it for many reasons. But I like to think the main one was that with it was a safe place for people with HIV to go without having to deal with the rejection that was and still is rife within the community. After its closure in 1998 he went on to set up and run many nights at a variety of clubs all over London, all with a reputation for being INCLUSIVE.  Which on a gay scene as large as the one we have in London is nigh on heard of. For the most part the scene in London is compartmentalised into types, not only for the music played but also for the clothes you wear and the body type you adopt.

Despite taking a lower profile Spike was and is one of those people who gets things done. But there comes a time, I guess, when your very success becomes the tool you get slayed with. And unfortunately people will look for vulnerabilities. After one WAD event that took place in KOKO in Camden, Spike having had enough of being the one to do all the work, took a step back.

I guess there comes a time when people become complacent and HIV was no longer fashionable enough for many. But it was never a question of what was in vogue for Spike. For Spike it was and is a passion to make a difference. When I first told him about my own diagnosis on a day we met quite by chance, he took control and he and his partner George whisked me to their house, made me copious cups of tea while watching sci-fi movies. You see, Spikes nature is to love and care and entertain people - to will their concerns away, even if only momentarily.

And now? Well he has come full circle.  Two years ago he set up a drag drama group called The Drama Queens, putting on quarterly productions such as Sweeney Todd. He is as happy as I have ever seen him – and he maintains a drive and focus to put anyone to shame.

He’s another well deserved member of the select Heroes’ Club

Way back then I wanted to start writing, but I wasn't quite sure how to go about it. I just knew that I wanted to write. Blogs were becoming more popular at that point and they were quite easy to set up. These were the days before Twitter and Facebook, and a blog was one of the principle ways to communicate via the new "social media."

My inspiration was the dark humour of a bunch of guys in AIDS in the 1980s and early 90s who created their own Zine called Diseased Pariah News. These were dark times and they required dark humour. It was the only way I could get through the era of no real hope for treatment, while watching friends and acquaintances die. I can see complete copies that I'm happy to say they've finally put online. It's part of our history, check it out.

Some people were highly offended by Diseased Pariah News. However, I loved it. Who could forget the fake ads for "AIDS Barbie" and their matching Bob Mackie design bedpans? AIDS Barbie also had the Malibu Home Hospice, which was the camper on the go.

Every month had the "Innocent Victim" poster boy. Remember this was a time when there were clear distinctions between those deserving this terrible death and those who didn't. Children and those with blood disorders were on the top of the innocent victims list; also fairly high were the wives of bisexual men.

Looking back at these images I really see how much I've toned it down. Back then I wanted to shock people. My theory was that I was not going to be defined by others, I was going to do it myself, and this was how I was going to do it: with my own brand of irreverent humour.

During this time a fellow named Kostas in Greece, a man I've never met to this day nor have seen an actual photo of, began to send me these great images. I soon began asking him to make up banners etc for me. 

This one I made myself, you can see the difference in quality! 

Part of my shtick at the time was that it was hard to pull off HIV as glamorously as I could. This started when a friend of mine many years ago came to me after getting his test results, still worked up with all the stress he put himself under - he told me that it came back negative. I put my hand on his leg and said, "It's ok Steve, it's not for everyone, not everyone call pull it off as glamorously as I can, you'll be ok."

To this day I do warn people that it does take a lot of work to pull of HIV as well as I do, and this is best left to trained professionals. I think Dr. Oz would agree. There are some out there who have found themselves positive and become frustrated as it takes time to learn the ropes.

Anyway I digress. I had a lot of fun writing in those days just allowing my imagination to take off and not think about what others thought.

Today being the publisher of PositiveLite.com has brought me into another stage of evolution where I find myself not wanting to be as wide open in my personal life, and a little, and I know it's shocking, camera shy.

However writing this post reminds me that I have to put a bit more fun back into AIDS, or at least my AIDS.

Now on to some of the images! I went to a conference in Africa and then in Australia. I had Kostas make up a poster for my alter ego, Miss Retro Virus, for her world pandemic tour complete with tour dates. He also made up some very fun banners for each country I was in.

When I started my everything-but-the-kitchen-sink combination of medications in 2006, I wrote all the way through that. Trust me when I tell you it wasn't pretty, especially with the Sustiva and losing my ability to even write complete sentences. I still shared this difficult experience and kudos to anyone who attempted to read it.

After doing my World AIDS Day interviews several years ago, I had been on the D-list tour while my friends were talking to the national newspapers, I just finished public access television and 24 Hours free news magazine (the one you read on the subway and litter the floor with). After getting out of the Rogers TV station, basking in the afteglow of appearing in between a group of modern dancers and a guy selling "Scorned Women Hot Sauce," I declared that I was the "Kathy Griffin of AIDS"

And finally one more glamour shot while I walk down memory lane....

When I was 15 years old I wore combat boots and army jackets I found at the Army Surplus store and stage dived into mosh-pits at hardcore shows. I also started up an animal rights group called AREA (Animal Rights and Environmental Awareness) with the aid of my friends. The group gained some great visibility in our city. We worked collaboratively with older, more established animal rights groups in the community. We got vegetarian items put on the school cafeteria menu, organized a trip to Ottawa to protest the seal hunt, and even brought Peter Singer in to give a speech in the school auditorium.

I learned a lot in those early days of activism.  In particular, I learned a lot about what not to do.

When I was 15 I was impressionable, and one of my first experiences of activism came from PETA (People Against the Ethical Treatment of Animals). I now know PETA to be a giant wheel of propaganda that uses shock techniques to jar and horrify people into obedience. Their president, Ingrid Newkirk, famously compared chickens in slaughterhouses to holocaust victims.

Our group was much more moderate. We didn’t use direct action techniques, we conducted peaceful protests. We made signs and banners and costumes, did a lot of letter writing, hosted meetings in the public library and held benefit concerts.

One day, during a protest in downtown London (Ontario), a PETA representative joined us. He argued fiercely with any member of the public who dared to question our cause. “Happy heart attack,” he shouted at one man. “That’s not how we do things here,” I thought. “He’s alienating the people we are trying to reach.”

Yet, I too had an extremist attitude. I sneered at “vegans” who ate commercial baked goods where the last ingredient happened to be lactic acid. I shoved graphic PETA literature at everyone I could. My favourite t-shirts had logos like “Oscar Murder” and “Dairy is Rape.”

I don’t regret the illegal methods of activism we occasionally used, but I do regret my attitude. At the age of 15, I saw things as black and white, us versus them, right and wrong. I lacked understanding, compassion or flexibility towards people who were not 100% committed to our goals and mentality as activists. I’m certain it turned people off.

Flash forward 15 years. I’m no longer a vegetarian; in fact, I’ll eat just about anything, even pigs’ ears and bone marrow. I’m no longer an animal rights activist. But activism is still a part of my life.

My cause has changed, but I’m also a much better communicator now and a lot more moderate. That being said, I don’t budge on my values or issues that are important to me. And sometimes I see myself lacking in patience when communicating to others about these issues. Take the criminalization of HIV non-disclosure. My very first fight with my boyfriend happened early in the relationship and it was over this subject. I can’t even remember why I brought the issue up. I think I mentioned it in passing as part of what bothered me that day. I expected him to just understand, to get it, to see clearly as to how criminalization was causing ripples - no, tidal waves - of problems.  It caused a fight because my scientist boyfriend, naturally curious and trained to be sceptical, questioned me, and didn’t like my “I’m right about this and I don’t want to hear anything different” attitude.

Issues like this get me worked up quickly, because it’s an emotional discussion for me. But how can I expect a lay person to understand this complex issue without a proper introduction? Most people don’t even know the basic facts about HIV transmission, let alone the complexities that accompany disclosure and the law. I should have taken more time to gradually introduce the issue.

At “The Art and Science of Knowledge Exchange,”a conference put on by CATIE, Richard Elliot gave a presentation called “Raising the Bar to Limit the Law: Principle and Pragmatism in Educating Criminal Justice System Actors on HIV.” The lecture reminded me that lay people empathize with the HIV negative person in a criminal case because they relate to them, so they need to be brought in to the conversation in ways that allow them to see different sides of the issue. Other lectures at the conference, like “Knowledge Exchange in the Moral Borderland” by Dan Small, made me think about the process of changing cultural norms. Whether we’re trying to get the community on board with harm reduction, safe injection sites or prosecutorial guidelines on HIV non-disclosure, we need to work on a more fundamental level of helping people reflect on the values that inform their beliefs. These shifts need to accompany sufficient knowledge so that people can re-imagine and reinterpret roles and concepts like law, public health, human rights and risk management.

It’s not easy. But shifts in values and culture are sea-changes that require patience on the part of the captain.

Thank you for endorsing the Ontario Working Group on Criminal Law and HIV Exposure (CLHE) campaign urging Ontario’s Attorney General to develop prosecutorial guidelines for Crown prosecutors handling allegations of HIV non-disclosure. We now need your urgent help once again – please re-sign the guideline call today at www.ontarioaidsnetwork.on.ca/clhe.

In December 2010, Chris Bentley, the former Attorney General, promised to develop guidelines. Since then, the Ministry of the Attorney General has not informed CLHE when it will be honouring its commitment to develop prosecutorial guidelines, and has not responded to CLHE’s guideline recommendations. CLHE’s recommendations are here,  

It is particularly troubling that the Attorney General, after committing to develop guidelines, has filed materials at the Supreme Court of Canada calling upon the Court to rule that people living with HIV must disclose their HIV status before any sexual activity whatsoever, and that not disclosing should be prosecuted as an aggravated sexual assault, which is one of the most serious offences in the Criminal Code.

When asked about this position, former Attorney General, Chris Bentley, indicated that although the intervention materials advocate for the elimination of the current significant risk test, the Attorney General of Ontario has no intention of taking such a position at the Supreme Court of Canada.

It is vital that the Attorney General fulfill the promises made.

But, as of today, we have not received any guarantee from the new Attorney General, John Gerretsen, that the Ministry of Attorney General will amend its intervention materials and take the position that people living with HIV should not be prosecuted when there is no significant risk of HIV transmission.

The Ministry of Attorney General has until December 20 to submit its final materials to the Supreme Court.  While preparing the materials, the new Attorney General, John Gerretsen, needs to know that the community is mobilized and is watching him.

This is why we ask you to once again endorse the guideline call, upon which a new email will be sent to the current Attorney General, John Gerretsen, urging him to develop guidelines by December 31, 2011.

To re-sign the call, please go to www.ontarioaidsnetwork.on.ca/clhe.

Guidelines are urgently needed to ensure that HIV-related criminal complaints are handled in a fair and non-discriminatory manner. Please take action.

Sincerely,

Ryan Peck, co-chair, Ontario Working Group on Criminal Law and HIV Exposure

Anne Marie DiCenso, co-chair, Ontario Working Group on Criminal Law and HIV Exposure

Website: www.halco.org

Above (left to right) Berlin Patient Timothy Brown, PositiveLite.com publisher Brian Finch, cure activist Matt Sharp

It’s hard to report effectively on a two-day conference like the recent Ontario HIV Treatment Network Research conference in Toronto  I’ve just returned from.  That is particularly so as, while excellent in content, there were no overwhelming themes that broke through.  That fact undermines in no way the sense one gets of the HIV research agenda moving forward, of doing great work, of optimism even, that emerged.

So I’m going to concentrate on just two sessions which caught my ear and eye, and which also happened to be amongst the most well attended.  Today, I will talk about the search for the cure.  Tomorrow I will cover the emerging interest in researching on-line HIV prevention interventions for men who have sex with men.

First the cure -  and some commentary. It’s something, surprisingly, we hardly ever talk about in the HIV community – perhaps because the concept is scary  (what we all DO without HIV?)  or considered wishful thinking, or daunting. Any hopes we might have – like those associated with the all too many vaccine studies that have fizzled – are to be avoided.   And while some/many of us are knowledgeable about many aspects of HIV,  how many of us know what exactly is being done to find a cure, how far away that is, or if it is even feasible? And while as a community we push continuously for more money for AIDS Service Organizations, and fundraise endlessly on their behalf, when was the last time you heard even a whisper about money being needed to research a cure for AIDS.

Sadly , it seems,  few are  advocating  really LOUDLY for a drive to find a cure for AIDS.

I’m part of the problem. I hardly even think of the subject at all.  I think in part, for people living with HIV, it demands such a huge psychological leap.  We are accustomed to thinking about HIV as a disease without a cure.  That mantra is repeated by countless well-meaning HIV prevention workers and people living with HIV who do public speaking.  That message is seldom tinged with optimism.

So it was a breath of fresh air to hear people talk this week at the OHTN Research Conference of a cure in terms of something that is not only achievable, but in one singular individual has in fact already been achieved.  That individual is Timothy Brown.

Timothy Brown, better known The Berlin Patient, was a speaker in a much anticipated session on the search for the cure. Timothy’s claim to fame of course is that he is the man who once had AIDS, the only person in the world who has been cured.  It’s fairly well known that the process which cured him isn’t readily transferable . Brown was being treated for leukemia by way of a radical and ultimately toxic stem cell transplant from an individual – they are out there – supposedly immune to HIV. These circumstances, perhaps combined with other treatment factors, led to total and permanent eradication of the virus from his body.  Five years later, he remains HIV-negative.

Timothy turned out to be a quiet, unassuming man, not entirely comfortable, it seemed, about being in the public spotlight – and as it happens, tired of being referred to as The Berlin Patient.  (He lives in San Francisco after all.)  The process he underwent was apparently pretty horrendous and he suffered cognitive damage as a result.  But he is a game and engaging speaker, whose time at the podium got a standing ovation.

His mission now is to spread optimism about the possibility of a cure. He said of what happened to his quest for a cure  “it’s dangerous, it’s complicated, but it’s possible.”  He left the assembly with rousing words.  “I hope that my experience brings renewed optimism.  My dream is to stand before you not to say “I am here, cured of AIDS”, but “we are here, cured of AIDS.””  It was a good finish.

Timothy was joined on the big Toronto Hilton Stage by Matt Sharp, another familiar name on the cure scene.  Matt is an HIV-positive cure activist, diagnosed in 1988.  A veteran of treatments and, like myself, a victim of resistance issue through participation in early and only partially successful regimes, Matt has participated in a complicated gene therapy trial which, while not a cure, was successful in elevating a CD4 count which previously was stubbornly resistant to  moving upwards. Matt’s message was also one of optimism.  “The momentum for a cure is accelerating” he said. “Imagine a world without AIDS!”

After their presentations the two retired to the third floor for a chat and video interview with PositiveLite.com publisher Brian Finch.  That video, filmed as part of this site’s  collaboration with the OHTN on video productions like this, will be posted on both websites shortly.

Meanwhile, you can read about both Timothy and Matt in an excellent article in Discover magazine I've linked to here. 

Next from me on the OHTN Research Conference:  How much do we know about the effectiveness of on-line HIV preventions on gay men – and what’s the impact of watching gay pornography?