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.

While Uganda’s Anti-Homosexuality Act - affectionately known by its supporters as the “Kill the Gays” bill - isn’t new (it was introduced in 2009 by parliamentarian David Bahati), it’s recently experienced an aggressive resurgence; in November 2012, the Ugandan government revived the proposed bill with concerted efforts to pass it before year’s end.

Admittedly, I didn’t know much about the bill when it was proposed in 2009; however, when it began to resurface a few months ago in the media, I quickly starting paying attention and launched into an informal investigation on what was happening and why. Being an avid HIV and AIDS researcher, advocate and activist, once I discovered there was a clause about people living with HIV, I became even more invested. In addition to my life and work in HIV, I’m also a queer identified feminist who has lived in southern Africa and who often finds myself at the crux of various social justice struggles, with Uganda’s current situation being no exception.     

Once I began researching Uganda’s Anti-Homosexuality Bill*, what I found was stomach-churning and heart-wrenchingly horrifying.

Here are some of the highlights of the original bill: the purpose of the bill – fuelled largely by Evangelical beliefs (and supported by Evangelicals in America) -  is to preserve marriage as a contract between a woman and a man, to protect children from deviant homosexual behaviour, and importantly, to prohibit sexual relations between two people of the same sex while simultaneously prohibiting the promotion or recognition of such relations. “The offence of homosexuality” is roughly defined as any intentional touching, penetrating, or stimulation of sexual organs between two people of the same sex; if found guilty of this “offence”, a person can be imprisoned for life.

If you think that’s horrendous, brace yourself. The charge of “Aggravated homosexuality” is used as an umbrella term under which numerous activities/offences fall, including sex with a minor (someone under the age of 18), sexual abuse of someone with a disability, and being HIV-positive, among others. Upon conviction, those who commit “aggravated homosexuality” will be sentenced to death.   

For the most part, the international community did not respond kindly to Uganda’s homophobic and murderous legislation and countered this legislation with freezes in foreign aid and international calls to abolish the bill (or at least the part of the bill which called for the death penalty). I’ve read numerous articles to suggest that in 2012, the Ugandan government made some amendments to the bill which allegedly included the elimination of the death penalty though the amended draft of the legislation has not yet been made available to the public and therefore, it is nearly impossible to confirm if this is true. 

Whether the death penalty has been removed from the bill is an important fact to clarify, though I would argue that in many ways, the damage has already been done. Once the floodgates are open (i.e. the Ugandan government giving the general public permission to discriminate against, stigmatize and perpetuate violence against the LGBTQ population, the constant threat of a fine plus up to three years in jail for not reporting an “offense”,  etc.), how easy will it be to close them? This is especially true when the bill includes a clause stating that anyone who has been “victimized by a homosexual” can kill the LGBTQ person in question with impunity. Or that the bill trumps confidential relationships typically shared between doctors and their patients (in other words, doctors must report any patients they see who confide in them about being gay and/or being gay and HIV+).

Upon learning this, I immediately began considering the numerous disastrous effects this will have on people living with HIV and the transmission of it in Uganda.   For starters, the inclusion of the HIV-positive clause in the Anti-Homosexuality Bill reinforces the historical and problematic relationship that exists between gay men and HIV and AIDS. To highlight HIV within this bill continues to suggest that HIV is “the gay disease” even though in many African countries - Uganda included - the epidemic is generalized and often more prevalent in heterosexual populations. By underpinning the connection between gay men and HIV, this bill may inadvertently give the straight population permission to distance themselves from HIV education, awareness and prevention and more easily disassociate from better sexual health practices because they don’t feel HIV is as relevant to them. Conversely though, with the increased state-sanctioned discrimination against the LGBTQ population in Uganda, I suspect that HIV and sexual health education targeting this demographic would likely be scaled down if it hasn’t already been.

Effectively, the Anti-Homosexuality Bill has the potential to negatively impact HIV education and prevention for both the LGBTQ and straight populations alike, with different methods of attack. 

Another area of HIV awareness and prevention which immediately came to mind when thinking about this bill is the impact it will have on testing. According to UNGASS, in 2010, only 20% of women and men between 25-49 years of age had been tested for HIV in the previous 12 months and knew the result of that test. We know from experience that stigma and discrimination around HIV exist and when coupled together, create an environment of fear, shame and hostility. Now imagine this environment layered with state-sanctioned violence and oppression against those who are LGBTQ-identified with an unknown HIV status and try to put yourself in the shoes of someone considering an HIV test and how negatively they would be impacted if their test were positive. Wouldn’t it just be easier to not know? For many, this might result in actively choosing not to know their status out of fear of the very real consequences that they may face.

In not knowing their status, it is possible that many folks are carrying the virus and are subsequently unknowingly infecting others. The risk of knowing your HIV status is dangerously compounded for any LGBTQ-identified person in Uganda; receiving a positive test will result in death at the hands of the government yet not getting tested will be a certain demise for those who are unknowingly living with HIV. 

When access to healthcare and access to treatment are compromised, how can we expect the LGBTQ population to thrive, especially when their lives are complicated by HIV? Given that all institutions (education, healthcare, etc.) are expected to follow the proposed bill, what is this going to do for HIV prevention education, especially for the LGBTQ community?

UNAIDS identified men who have sex with men (MSM) as one of the highest HIV risk groups in Uganda and in 2009, MSM accounted for 13.7% of people living with HIV. Not surprisingly, the same year that the Anti-Homosexuality Bill was introduced, Uganda stopped collecting HIV data on MSM. At the time this article was written, 2009 was the last year that UNAIDS reported HIV statistics on MSM and HIV. With only 54% of its poz population on anti-retrovirals (as of 2010, according to UNAIDS), I question how many of these folks are LGBTQ-identified and how access to their treatment might be interrupted by the proposed legislation, if it hasn’t already been. 

To say that there is a lot at stake should the proposed Anti-Homosexuality Bill pass is a vast understatement. The situation is dire and what is at risk is not only the lives, human rights and dignity of many LGBTQ-identified Ugandans but also the potentially disastrous cascade effect that this legislation could have on HIV awareness, prevention, transmission and treatment.   

*Want to read the bill yourself? Here’s a link to the 2009 version.

Back in early 2011, as some of you may remember, we had our funding pulled after almost 25 years of providing prevention, education, testing and support services for those living with or affected by HIV, and the wider population of Hertfordshire. This was not the result of a funding cut, more from a desire to transfer funding to another organisation chaired by an employee of lead funding body Hertfordshire County Council (HCC).

This decision was taken without consultation, and resulted in a service which does not meet the needs of those living with HIV in west Hertfordshire, where the majority of those affected, and also the majority or residents, in this affluent county reside.

For those of you unfamiliar with the geography, Hertfordshire is a large county just outside London with a population of 1,119,800 (Source HCC census data) It has a rather disjointed transport network which makes it very easy to travel north to south in the county but not east to west.

For this reason historically there had been two agencies providing HIV services in the county, one east, the other west (the Crescent). As mentioned the decision to transfer all services to the east of the county was without consultation, and seemingly for no reason, other than the desire of the other agency to take on the service countywide.

The Crescent has been fighting this decision ever since on behalf of those 300 or so people who rely on us for support in the west of Hertfordshire alone. We have gained support from a number of notable sources, including Peers such as Lord Fowler and Lord Rennard.

Also stars from the stage and screen such as John Sessions, CJ de Mooi and Stephen Fry have all waded in to help. We even made it to the House of Lords last April to discuss this matter in person with the likes of Lords Fowler and Lord Rennard, Baroness Jolly, MP’s and other notables.

Regrettably, though the support is ongoing and very helpful, without funds we are struggling, so much so that we had to lay off all staff at the end of August and the service is now being run by volunteers like me using our own money to keep the doors open.

Following coverage of the situation in the satirical magazine Private Eye things began to change a little with HCC appearing to be more concerned about the situation and a number of meetings took place between The Crescent and HCC officials.

We were invited to tender for the new contract for services due to start in April which we duly did. We passed all stages of the prequalification process. The process is designed to establish if we had the ability to perform the role of support agency accurately and efficiently, with appropriate skills and procedures in place.

Unfortunately HCC decided that as we had been spending more than we had as income for the previous two years they we were an unacceptable financial risk. This is hardly surprising given they were responsible for removing our income in the first place. It was also something of which they were aware before inviting us to apply.

We therefore see this as yet another attempt by HCC to be seen to do the right thing whilst not really having any intention of doing so. It means that we are continuing to support those in west Herts using our own money and continuing to work as volunteers.

We have been fortunate to get some small donations from local County Councillors from their locality budgets which clearly indicates that not all within HCC agree with their stance. These donations have enabled us to pay basic utilities but little else, and so we are still carrying on in a voluntary capacity only.

The demand for our services has never been greater, however with dwindling resources and relying on volunteers alone, many of the services we offered have now been suspended.

In particular the testing services so vital in the struggle to get those undiagnosed tested and into a care regime have now stopped. This is primarily because of a lack of appropriately trained staff as a minimum of two people need to be present to undertake the process.

On World Aids Day 2012 Prime Minister David Cameron called for more to be done to halt the increase in HIV transmissions in the UK as figures released show that transmissions between gay men had reached an all time high and that almost half (48%) of new cases had been acquired through heterosexual contact.

However our appeals for help over the last two years sent to Mr Cameron and his deputy Mr Clegg have seemingly fallen on deaf ears. The response has generally been that “it is a local decision, they cannot get involved” or another excuse “it is a local decision and up to the local people to take the local authority to task and hold them accountable.”

Appeals to the Department of Health have brought similar responses. Publically everyone in a position of authority seem to be saying the right things, but when it actually boils down to it nothing happens to help struggling long established organisationslike The Crescent.

Meanwhile, as can clearly be seen, cases in vulnerable groups are on the increase, the heterosexual community are for the first time accounting for almost half of the new cases and a further 25– 26,000 people are predicted to be undiagnosed at the moment.

If this trend continues the progress made in fighting HIV in the UK will be undone. Do we really want that? Currently it is estimated that 1 in 20 Gay men in the UK are affected and this rises to 1 in 12 in London itself.

With prevalence so high in London, areas like west Herts will be affected similarly. Towns and cities like Watford and St Albans are prime commuter locations 15 - 20 minutes away from central London. It clearly indicates a need for more support, detection, care, and education services available in such areas. However the trend seems to be to reduce or remove these entirely.

So what next for the Crescent? We will fight on, we are still endeavouring to obtain more funding, there have been some very generous local people who are helping, but for any sort of hope for us we need to broaden our number of donors.

We continue to get coverage in national and local media, in particular our participation in the Stand Tall Get Snapped exhibition where 30 HIV positive people came forward to tell their story in an exhibition which ran in a prominent central London location from World Aids Day though to last week.  A link to one of the articles featuring a Crescent Trustee, Rachel, is here. 

As mentioned we were all made redundant in August 2012 and therefore have been working as volunteers since then, but this regrettably is not sustainable as none of us have a huge amount of savings to fall back on.

Personally if it hadn’t been for a small inheritance from my Grandmother who passed on recently I wouldn’t have been able to get this far. As a former St Albans resident, retired headmistress and mothers union member I know that Nan would approve of the use, indeed we discussed the issues shortly before she died inearly 2012.

So another year has passed, we are still here, but only just, we still provide training and education services, drop in services, social groups and so on. However without some real help of a financial nature we will be lost, and those hundreds of people we support will have to fend for themselves. Not to mention those who without education will be unaware of how they can avoid HIV and therefore be at a greater risk than they need be.

It is estimated that in medication costs alone one new diagnosis today will cost the NHS approximately £260-300,000. This is without the social care cost, or considering the impact on the individual and their family. £300,000 would fund us for around three years, not hard to see that even if we only prevent one transmission a year we are saving money for cash strapped economy.

The trouble is no-one seems to have grasped this point yet. Our fear is that by the time this is finally realised it will be too late for us, and too late for countless others who have unnecessarily become an HIV statistic.

Worldwide we are on the cusp of beginning to win the fight in reducing infection rates and deaths. However if we continue to allow agencies like the Crescent to close, all that progress will be lost and HIV will begin to win. Who wants that? Not me, nor apparently our political leaders. Words are cheap, action is what is needed.

Herts County Council maintained they couldn’t afford to continue funding two organisations, however a local newspaper (St Albans Review) reports that HCC have dished out over 30 million in the last two years in so called “golden handshakes” to staff, with one (presumed to be the former Chief Executive) walking away with £295,000 last year, and another 3 taking a share of £562,000 

In comparison our funding was less than £100,000 pa, small change in comparison really, isn’t it!

We will fight on for as long as possible, we have more discussions ongoing with potential funders but if anyone reading this is feeling able to assist, all donations of any size will be very welcome.

In the UK this can be via Vodafone Just Text Giving by texting CRES19 plus £1, £2 etc  up to £5,after that £10 as a maximum to 70070, or via our website www.thecrescent.org.uk using PayPal, or by sending a cheque or postal order to The Crescent, 19 Russell Avenue, St Albans Hertfordshire AL3 5ES.

Overnight, Edinburgh and Scotland had acquired an HIV problem. Progress would be slow and hard won. Gained it was, however, at least in drug-related HIV. Sexual transmission would remain problematic as we will note. 

What was to become a twentieth century public health success started in the response of communities and individuals immediately affected. The 1986 peak fell dramatically as drug users tested almost universally and formal interventions reinforced behavior changes. Now, for the last decade or so, new drug-related infections are reported in single figures, most of them older infections, or ‘imported’ from outside Scotland. 

Community 

Changes in drug practice started earlier than the 1986 watershed. A dense concentration of cases, the immediate impact on communities, the cruel devastation that hit family members across generations, contributed to change. 

Edinburgh’s first official needle-exchange scheme in 1986 was a landmark, followed by Dundee and Glasgow. The reality is that Forsyth, the government’s Scottish Office minister, approved only one afternoon a week in one building in the entire city. Meantime, unofficial needle exchange schemes had been preparing the ground. The pharmacist in Wester Hailes distributed sets of works and conscientiously recorded return rates, so building an evidence base. In the untidy office of a Leith drugs agency, boxes of works were stacked high before being distributed on the streets and in homes. Similar schemes operated from GP surgeries in Muirhouse and Craigmillar. 

National Health Service workers supplied the needles against legal restrictions in their attempts to stem the spread of HIV. 

Leadership 

It is impossible in the space of this short article even to list the names of those who were thrust into leadership roles. The United Kingdom’s harm reduction response to AIDS and drugs is often dated from 1988 with publication of a seminal report by the Advisory Committee on Misuse of Drugs (ACMD). Two years previously, however, Scotland had produced its so-called ‘McClelland report’ advocating an urgent reappraisal of services, establishing needle exchanges and methadone substitute prescribing, and strongly supporting harm reduction as the basis for its drugs strategy, soon to become reality on the ground. To this day, the McLelland report reads fresh and relevant. 

Appointment in 1986 of Dr George Bath as Lothian’s first AIDS Coordinator enabled a planned approach. Recognising the social as well as the health dimensions of HIV, Lothian Region’s local government arm appointed its own AIDS Coordinator in the person of David Taylor who influenced a diverse range of partners. By 1992, health promotion, harm reduction, primary care and community teams existed across the area. Strategically, representation of positive people, gay men and drugs groups complemented the clinical expertise of Ray Brettle in infectious diseases, of MacMillan and Scott in genito-urinary medicine, and of Richardson in psychology. 

An outstanding feature of those leading the response was their human concern, informed by front-line experience. David Taylor, for example ran the Leith needle exchange and was an experienced social worker. 

Academic and research bodies contribute strongly to Scotland’s national and international response, and, although the HIV research team headed by the late Roger Lewis no longer exists, the Chief Scientist’s Office, the MRC and respected academics are well integrated so as to influence policy and practice. 

The approach did not lack opponents, especially in a press viciously hostile to people with HIV. A building, surveyed in confidence by Taylor in a nearby rural town for potential use as an AIDS hospice, was burnt down that same night. Extension of needle exchange schemes to Dundee and Glasgow was met with pickets, resident protests and television cameras. 

NGO leadership focused around the Scottish Drugs Forum, Scottish AIDS Monitor, Waverley Care, a range of smaller community-based agencies, churches, and people directly affected by the impact of HIV such as the HIV Carers. Coordination and representation of these bodies came in 1995 with creation of the Scottish Voluntary HIV and AIDS Forum, latterly HIV Scotland. 

Pragmatism 

For over a decade, Scotland’s HIV response was overseen by a Conservative Government, deeply unpopular north of the border. Its Reaganite ‘war on drugs’ rhetoric was countered locally by pragmatic realism and the Scots sense of social justice, without which a greater tragedy would not have been averted. 

Globally, Scotland was second only to Amsterdam in adopting its pragmatic harm reduction approach. But this allowed no room for complacency, with Taylor warning of ‘failure’ in 1988, the same year in which an ACMD deputation took local agencies to task. Public demonstrations were held outside Scottish Office headquarters. The quality of data used by the Chief Medical Officer’s 1995 to demonstrate that we were ‘slowly losing’ would be used by campaigners to advocate greater attention to sexual transmission. 

This epidemiological information is collected by Health Protection Scotland under the leadership of Professor David Goldberg, who early on had the prescience to create a highly effective reporting system, an indispensible plank in the national coordination and prioritisation of HIV. 

A number of specific interventions developed. Practical help for people with HIV, building of a bespoke AIDS hospice, outreach to sex workers, prisons and police liaison, and support for women and children through specialist paediatrics and residential rehab, all helped to complete what seemed at the time to be more patchwork than plan.

Built on these foundations, Scotland pioneers a far-sighted Hepatitis C strategy, and naloxone is routinely available through a team of trainers with experience of dug use deployed across the country. 

Thirty years on, however, and with media scrutiny and occasional spikes in drug-related HIV support for harm reduction must not be taken for granted. In a recent Scottish Parliament debate, the current strategy had to be defended. Thanks to well-informed cross-party leadership, it was reasserted. 

In 1993, the late George Bath warned that risk from sexual transmission lay ahead, surely underestimating the impact at the time. The story now is of an epidemic that exceeds that of the 1980s, gay men now being the key population affected. 

The need for community action, leadership, and pragmatism is as pressing and urgent as ever.

The fifth workshop in the current series of free open discussion forums for people living with HIV hosted by the AIDS Committee of Toronto (ACT) will be held on Wednesday, January 9, 2013 at 7:00 pm at the Ramada Plaza Hotel, 300 Jarvis Street in Toronto. 

This month, the forum will focus on the challenges faced and successes experienced by HIV-positive newcomers to Canada. Topics to be discussed will include: 

• Ethnoracial diversity
• Getting into health care
• Navigating the system

The guest speakers are: 

• Dr Alan Li, primary care physician, Regent Park Community Health Centre, Toronto, and founding co-chair of the Committee for Accessible AIDS Treatment 
• Maureen Owino, Program Coordinator, Committee for Accessible AIDS Treatment 
• Sue Hranlovic, primary nurse practitioner and AIDS certified RN 

The forum will be webcast live so those who cannot attend in person can participate in the event online. The forum and the webcast will begin promptly at 7:00 pm and last two hours. 

To join the live webinar: login at 7:00 pm EST on January 9 (00:00 UTC, January 10) at www.actoronto.org/forum   

The forum will also be recorded and should be available for viewing on the day following the event at the same website: www.actoronto.org/forum   

This forum and webinar are free and no registration is required. For those attending in person, a light buffet will be available from 6:30 pm. 

For more information, see the flyer below or contact Robin Rhodes at This email address is being protected from spambots. You need JavaScript enabled to view it. or 416 340 8484 ext. 219.