And so it begins…THE TRUVADA DIARIES…
WED 12/08/15 10.00am
So I joined a facebook group called prepfacts https://www.facebook.com/groups/PrEPFacts and was getting regular feeds from their #postyourprep selfie campaign…at first I found it a bit off key but as the feeds continued and the jarring posts and overtly sexual tones subsided (or at least my cringing reaction to them did) I began to see some real love and scope for this group to make some real change. And change it made indeed – in me…I had been thinking about Prep for sometime now but as is – it isn’t currently available to your standard Joe Blogs poof in the UK – the #postyourprep guys are mostly based in the US. And using a clever system of ticking certain boxes to get their private health care to cover most of the cost of their daily Truvada pill
But as chance and life would have it – opportunity arose in the form of a very close HIV + friend mentioning that (for some reason – I haven’t quizzed him) he had a month of his Truvada that he could give me as he had some sort of emergency stash that he had kept in secret. It turns out he has 2 months and is more than happy to give his ‘sister’ a month to start whenever I want it. It was like the light bulb moment. A sign that I should do this.
Of course there are a few other ways a non-qualifier like myself can go about sourcing Prep or Truvada. The first which would appear to be the easiest and most straight forward of these avenues would be to buddy up with one of my friends who is positive and currently on treatment and attend his clinic with him as his ‘partner’ as guys in a serodiscordant relationships qualify if they push hard enough for Prep and make themselves known to The Partner Study at 56 Dean Street. To breakdown the big official words that I’m using (partly because it’s important to use the right terminology and partly because it makes me look clever!) a serodiscordant relationship is a ‘mixed status’ relationship where one partner is positive and the other negative. At this point I really need to point out how RIDICULOUS this imbalance is….Well on a purely scientific level at least…I’ll get on to the emotional, mental and anxiety aspects later. So back to the science…If you have a mixed status couple and the positive guy is undetectable and on meds, taking them regularly as instructed and responsibly i.e. not going out on a 3 day bender and missing doses or forgetting to take his meds away with him on holiday (not all adherence issues are drug or lifestyle related remember – most of them admittedly are, but not all) then it’s practically impossible for him to pass on the virus to his negative partner. The statistics depending on who and where you get your figures from are between 95%-100% proofed that the positive partner wont pass on the virus.
So what’s the point in giving Truvada as Prep to the negative guy in this situation? Kinda pointless innit?
Well yes if we look at it simply and on paper – it is. But life isn’t simple nor does it play out as predictably as guidelines on an instruction manual. Here is where the Truvada as Prep comes into play for these ‘mixed status’ guys. On an emotional level if the negative guy is anxious and unsure of putting his trust in the results from the recent studies and trails such as the Proud Project and the Partner Study which have informed the HIV health care advice given to guys in their situation. Taking Truvada allows him to take ownership and responsibility of his own sexual health…instead of HIV transmission and reducing HIV transmission remaining the responsibility of the positive person. A key point that I think is hugely neglected and overlooked in out current HIV treatment and prevention set up. I will explain further…if the positive partner missed his meds and has a spike in his viral load then the negative guy is back at risk – that’s expecting a lot of trust from the negative guy in this situation and might just be a bit too much for him if he’s already struggling to get to grips with having a HIV positive partner. Equally if these guys have been together for a while and they were both negative when they entered the relationship and one partner has become positive over the course of the relationship (perhaps through being unfaithful – it happened to me). If this is the case there are huge trust and honesty issues there already. Empower the negative guy. Let him be the master of his own sexual health. Gay men cheat at an above average level and we also accept and function in open relationships. If a guy only has bareback sex with his boyfriend it is kind of realistic to expect that he (like most of us) actually prefers bareback sex and so any extracurricular sexual activities with guys that aren’t his partner are most probably going to be bareback – and let’s be careful not to slut shame here. Shit happens – deal with it. Or as is the case here… Sex happens – deal with it. So if the negative guy is barebacking with other guys that aren’t undetectable or guys that think they are negative – he is back at risk. Truvada is offering him protection again. Although I need to point out, not from other STD’s in particular HEP C.
A second avenue available although less ethical (yes even less ethical than pimping out one of your positive mates and jacking his status in order for you to score free pharmaceutical drugs) is to clinic hop for PEP – PEP is a month long course of treatment that you can go to a sexual health clinic or A&E for if you have been expose to HIV. With PEP you need to get it and start taking it within 72 hours of your exposure for it to work. PEP treatment consists of 2 tablets a day. 1 is Truvada. So if you periodically ‘clinic hopped’ each month and lied about being exposed to HIV and request PEP you could simply just dispose of the second pill and take your 1 Truvada per day as you would as standard if you were prescribed Prep – It’s exactly the same. Exactly the same that is apart from the fact that this course of treatment (for 28 days supply of both pills) costs the NHS about £750. So you are wasting the NHS £375 pounds a month. That’s a staggering £4,500 per year but still much less than the estimated £20,000 that it currently costs to treat someone living with HIV in the UK, Then there are the extra resources to factor in like mental health and social well being.
The third option that you could choose is to dig deep and pay for Truvada yourself. Find a contact to buy it for you in India or America and get it shipped over. But this raises huge issues in itself. A friend who has been buying Truvada himself out of his own pocket has told me it costs him £10 per day. That’s not cheap it equates to half of what some people spend on their rent per month.
So there are all the options! I plan to start on the month that my friend is giving me this weekend and then either invent a positive boyfriend to get my next lot of drugs or drop in to a clinic and ask for PEP for a phantom HIV exposure.
I am well educated enough on HIV meds, the virus itself and the procedures of beginning Prep that I know I need to go for a HIV test to make sure that I definitely don’t have HIV and create drug resistance issues by taking Truvada with a new HIV infection. I need to be outside of the window period of 6 weeks – which I now am. Dean Street express here I come…
WED 12/08/15 10.00
So this article is kind of going to change direction in a bit but get on board for now. I arrive at Dean Street express at about 12.30. I had been there in May off my face on Crystal Meth, Mephadrone and G . I did some self testing swabs as part of their standard service but they were really busy and I didn’t have time to wait for my blood tests that would test for HIV and HEP C etc, I had also changed my phone number and not updated it so didn’t get the text back about my results. I have actually lost my Dean Street Express card with my barcode and patient number on it so I waited at reception and spoke to the girl there about getting a new card printed and updating my number. According to their system I missed an appointment last month. I explained that they would have an outdated number for me and that it was most likely that something came back positive from my last visit (I wasn’t sweating as I hadn’t given bloods so it couldn’t be HIV or HEP C. I just haven’t been aware that I hadn’t had results returned– totally my own fault. So she agreed that’s what had happened and that she would squeeze me in to see the nurse to discuss, this was a bit of a God send as it was super busty today and I kind of queue jumped. Within 5 mins I was sitting in front of a nurse who pulled up my details and explained that my swabs had come back negative or invalid but that my urine had come back positive for Chlamydia. As I missed the bloods on my last visit he asked when my last HIV test was which was last Easter (2014). We went through the usual list of questions including bareback sex, fisting, and slamming (injecting drugs) all of which I have done since my last test. I also requested – specifically make a point of requesting a HEP C test. He enquires “Why do you want a HEP C test?” I told him that I was HIV active and campaigning HIV issues and that I had recently been approached, recruited and flung into raising the awareness of HEP C and the new drug accessibility issues and that I really should have a test to know my HEP C stautus first of all and understand through experience what having the test and awaiting and receiving the results entails. So we start with the HIV test. His words were “So there have been risks, what result are you expecting today?” I replied with “Yes I’m aware there have been risks, to be honest, this is the first HIV test that I’ve had that I am nervous about. Nervous but not dreading. I’m 90% positive that it will be negative.” He replied “Ok – I get you, so you know the deal then. 2 dots means it has come up with a positive reaction but that just means it’s reactive, if that happens then we have to do a second test that tests for the actual virus in the blood. This instant test only tests for the antibodies in the blood. So we go through the standard little click on the finger and drawing some blood into a tiny straw. This then goes into the little round dish, he adds the first vial of liquid and then the second vial which reveals the results – either the single negative dot or the double positive dots. In goes the second vial of liquid and boom comes the DOUBLE DOTS. For a split second I scrambled in my head as to whether the words he had literally just spoken about the double dots equals positive had some how in the 5 seconds since he just uttered them been jumbled in my mind but that lasted no more than its allocated split second. Because if there was any doubt as to whether or not I had processed that information incorrectly it was immediately dispelled by the sudden and almost tangible shift in atmosphere in the room. God bless the nurse though he was great but those kind of situations for him must not get any easier and I had only just given him the proclamation that this test would 90% certainly be negative. David Stuart mentioned in one of the ‘Dean Street Wellbeing’ presentations that I had attended recently, in fact just the week before that at Dean Street, they diagnose 1 guy as positive every day. My mind turned again to the Nurse – David. I thought… these guys must come in to work in the morning and think – OK, today 1 of the patients we see is gonna get a positive diagnosis for HIV. And maybe they think…shit! Who’s gonna get that ‘unlucky dip’ My heart went out to David he had bad luck today. This was a one off core shaker for me but it’s a daily reality for him. He drew the short straw today – he got the ’live one’ today the double dotter – the poz guy.
He gathered himself and said he needed to contact the Health Care Advisor. I know how this process flows as David had it explained it at the HEP C and Chem sex discussion the week before. Little did I know at the time that he was prophesying the journey and process I would find myself sucked into a week later. Before he left, David asked me if I wanted tea or coffee or water. I declined but said to him that I would really like a cigarette. He empathized “I used to smoke and if I had just had news like that – I would want a cigarette right now too. But if you go you are going to come back?” I assured him that yes I would return and that as a sign of commitment to that vow, I agreed to leave my bag, Mac and iPhone in the room. I reassured him “ Don’t worry I’m not going to throw myself under a tube or off the nearest bridge” He gratefully accept “Good, that’s good to know” I thought, with the recent tubes strikes, I should be so lucky to find a tube train in London that was running for me to sacrifice myself to…And who says the tube strikes have no benefits?? He enquired further “Are you sure you’re OK?’ I stated for him that I probably knew more about HIV and how this all works than most HIV positive people. He added “Yes actually, you probably know more than me” I might do but I doubt I know MORE but I certainly know it differently from most people. I know it in a way some might see as almost like an internal conjoined twin but I left that construct in my head so as to round this chat up and get to freedom for a smoke.
Stepping outside was the start of the new journey for me. As I walked past the reception desk that I had checked in at less that 40 mins before I was suddenly aware that I was stepping out into the rest of the world away from this safe zone with my recent diagnosis and no time to process it. As I stood outside the barbers next to Dean Street Express I felt like an alien. I was watching people scurry past me, going about their day to day lunch time doings and I felt like I was existing in a different world from them now. That I didn’t belong here in the world that everyone else exists in. I can only describe it as thinking that I was like a fish thrown out of the water and onto this dry land world – gasping for air through gills that couldn’t breathe with the ease that my previously fully functional lungs could. It was so bizarre. I wanted to reach out. But I didn’t quite know at this stage what I was reaching out with and to who I should be reaching out to. I drew the last draw of my cigarette, threw it onto the road and made my way back down to the ‘Old Compton’ nurses room. I settled back into the seat I left 5 mins ago as a different person already. David returned to the room. He informed me that someone was on their way to talk through some stuff with me. I prayed – please god, let this ‘someone’ not be someone that knows me, that recognises me from my presence and activity on the scene and the arena of gay men’s sexual health issues that I write about. I then started to feel really bilious, I felt like I was going to totally shamelessly chuck up on David lovely sharply pressed shirt.
The Health Advisor came in fully briefed on me and my sexual exploits from the last year and had had a flag up of my AIDS activism and HIV awareness position. She also crucially was returning with the results of the standard second HIV test that takes 20 mins to yield a result and that tests for the virus in your blood as opposed to the first ‘instant test’ that tests for the body’s antibodies to the virus.
So she joins my HIV circus that is now in full swing. It’s official, not a false positive not a dodgy test. I am positive which she didn’t really linger on. She immediately set about getting on with business and snapping me into paying attention to what was now going down in a very assertive and maternal way. I liked this woman. She was kind and sure. David makes his polite exit, moving on to his next patient and hopefully a hug and some support from the Dean Street family for the shit luck of bagging the HIV newbie today. I hope I made his job a bit easier today by not going all Halle Berry Oscar style tear fest.
So back to business, Elizabeth is efficient but warm but I can tell trying to read my emotional state and shock levels. Luckily they had both settled down. The nausea from the post adrenalin surge of my double dots had subsided and I was starting to reoccupy my practical, logical mind space. She lays out a tray of about 10 test tubes and says “Ok Greg so this is the most blood that you’ll ever have to give for one set of tests” I looked at the tray and replied… “Well there’s always HEP C, I imagine you lay on a good deal for that too?” She hesitantly smiled, she still hadn’t jumped onto my vibe just yet. “Yes maybe, but these tests are very inclusive even presenting with HEP C wouldn’t require all of this because in here we test for your allergies, drug resistance, HEP C…. etc. So once you’ve had some of these tests like the allergies and strain of HIV test you wont ever have to do those again” “Ok that’s good cus I’m only little! You’ll have most of me in test tubes in labs if I had to bleed out that much every visit” “ Don’t worry, I’ll leave you enough in there to get you by” – so now we’re getting each other. That was a funny! We’re gonna get on. So we chatted and I brought her up to speed on what I do in the HIV arena and my equals=equals campaign. She goes through everything she needs to on her checklist and tells me that I need go to the main Dean Street clinic to get an appointment and treatment for the Chlamydia. She asked me if I would like to attend a support group/counseling session for recently diagnosed people run by people living with HIV. I explained to her that I didn’t think that that kind of support would be of benefit to me as I am usually the person on the other side offering the advice and support but that as an exercise in learning more about the whole process of becoming positive and what support and resource is offered to people in general that I would attend so that I was educated and able to direct other people looking for support to the group. We got onto talking about current medications and treatments and I expressed the importance I find in PrEP being made available to all gay guys and now. Not just those in serodiscordant relationships through the PARTNER study. She agreed and I told her that I was due to start Truvada as PrEP this weekend and I was just here to pop in and get my negative status confirmed so that I could start the meds. She had just finished drawing blood from my arm and at hearing this news she dropped her shield totally and kind of just shook her head very gently and grimaced. I offered “Yes, I know – the irony is not lost on me and that face. The face you are pulling is exactly the reason why we need to make sure that we make PrEP available now. With the tools we have available now, no one should find them selves in my position.” She agreed remorsefully. I continued “If we make PrEP available it covers a dual prong… It means people who want to take control of their sexual health will have to get tested for HIV before they take it. Therefore increasing the rates of early diagnosis for other people in my unfortunate and unexpected situation. And also empowering negative guys in being able to maintain their negative status.” She agreed again and we went on to chew the fat a bit on the PROUD and the PARTNER study. As she was writing up my appointment slip for the meeting in 2 weeks to get the results of my bloods that would give me my CD4 count, viral load, drug resistance info, allergies, and approximate period of infection I noticed her abysmal hand writing. I chipped in, “Did you just become a Doctor? I thought it was only Doctors that had awful handwriting” She laughed and got a bit embarrassed and apologised saying that sometimes she can’t even read her own writing herself, this is something we share in common and I then apologised if I embarrassed her and that I find random things amusing and that if we were going to hang out regular then she best get used to my slightly off key sense of humor. She reassured me that I would be OK and that if I was going to have sex that because I would have a high viral load and am very transmittable that I should wear a condom. I told her straight up that I intend to start meds straight away so I become undetectable as soon as possible because I didn’t want the anxiety of thinking that I could pass the virus on and that I am far too busy right now to think about sex and that I don’t intend to start fucking again until I’m undetectable. She confirmed for me that “You WILL have sex again” I couldn’t reply quick enough with “Don’t worry I know I am sooooo gonna have sex again, I know my worth. I’m not gonna be one of these positive guys that starts hating on himself and thinks he’s dirty and unsexy. I have a healthy attitude towards my sex and sexuality, I literally am just too busy and have bigger fish to fry right now and I really want to lead by example and make sure there is no chance of me passing this on before I start having sex. Even with another pos guy. It’s just not on the agenda right now” She accepted the argument as appropriate and responsible and simply said “Yes OK, that’s good. It’s different for every person, keep focused on you and do what you feel is right to do. Just be safe when you do” I hoped she hadn’t picked up on my major horn due to having abstained for the last 6 weeks through a hectic work schedule. I liked Elizabeth, she was sweet and real and let me know that here was support there from her and others. Available to me when I might need it. We wrapped things up and said our good byes.
Right now I had an insatiable drive to be back in the real world outside of that room and outside of that clinic. I needed to start existing again outside of this bubble this moment where I felt that time was standing still. Of being informed about a new life that I was about to be launched into unexpectedly and totally unprepared. Although I of all people wasn’t unprepared. I guess on a very deep hidden subconscious level I had been preparing myself as a gay man for this eventuality for as long as I could remember and certainly on a more conscious level had wrangled and dealt with it internally since my ex’s diagnosis. Boom! I was the out through the glass door and back in the real world – newly positive and with Chlamydia. I popped in to 56 Dean Street to see if I could pick up the antibiotic for my Chlamydia there and then but unfortunately that’s not how it works and so I booked a follow up appointment for the next day at 12.20. As I was booking this appointment, scheduled for less than 24 hours into the future it suddenly dawned on me that I didn’t know where there fuck I would be and what state I would be in by the time this appointment came around as I hadn’t planned on being here and in this position and if my life could change that drastically without my control and without any fore warning then it could very well change and be another totally new and unplanned life that I found myself in again, the next day at 12.20. I left the clinic and decided to walk home to Clapham North.
I walked down Dean Street and picked up my phone as I approached Old Compton Street. In my head I had already formulated my impending plan of action. There was no conscious preplanning for this occurrence but there seemed to be an internal order. I knew exactly what I needed to do, how I needed to do it and most importantly why I needed to do it. A mental list of who to tell face to face and straight away formed without provocation. The opportunity to step outside of my own situation and use this perceivable disadvantage as an advantage and go totally all out there seemed so logical, so powerful and so necessary that once the concept presented itself in my thoughts I did not question it again. The premise of my article – to compile my Truvada Diaries, questioning and exploring the avenues of obtaining the drugs, the practicalities of adhering to the routine of the drugs, the physical side effects of the drugs and the biggest question for me of “Would being on Truvada and being HIV protected increase my promiscuity, lead to more risk taking, result in me contracting a cacophony of other STI’s and ultimately alter my current sexual patterns and behaviour:” But it was clear that that was not an article that I was ever going to be able to write – first hand as a negative guy fighting to remain negative against the odds of stigma, Prep shaming and the lack of access to Truvada. But what struck me was this. I was in the perfect storm. In the eye of that hurricane. I had been awarded a moment of pure clarity and an opportunity to utilise the plans that I had already made and the skills that I already possessed and to draw all of these together. Accept the change of circumstances but also recognise the new opportunity that was presenting itself and log and document my journey to the positive….I was already there medically and physically but I had only just taken my first step mentally and emotionally. And so it begins. I swam with the tide, I didn’t feel the urge to swim against it. It would eventually win anyway so I did just that. I felt where this was about to go and I jumped onboard as the Captain of the ship – I didn’t bunker down and hide away as the stowaway on an alien vessel. I was going to kick this fucker back and starve it of its oxygen and power. I was going to take it back. My way and for me and for every other poor bastard that wasn’t as lucky or as defiant or as prepared as me. HIV screamed ”Fight” and I screamed back “Bring it”. So here we go. The diary for my first 48 hours…..I’m about to drop it for you…