There’s no doubt that HIV is an under-discussed issue and attracts a fair amount of stigma – but the situation regarding stigma and education about Hep C is even worse. Now imagine living with both.
I met ‘Adam’ via Twitter, he’s a gay guy in his thirties who has recently been diagnosed with both HIV and Hepatitis C. I asked him if he’d let me interview him for UKPositiveLad.com and he very kindly agreed, on the basis that it was done anonymously – which is entirely understandable.
ME: Thanks for talking with me Adam, let’s start at the beginning. You’re HIV+, when did you find that out?
ADAM: I was diagnosed in January. I went to 56 Dean Street, they have something called the Code Clinic on Tuesday nights that is for gay men who have risky sex or use recreational drugs — it’s meant to be very non-judgmental, and really is. I was diagnosed with HIV, and with Hep C co-infection
ME: You got both diagnoses at the same time? That must have been difficult?
ADAM: I got the HIV diagnosis that same night, but I had to wait until the next week to get the results from the blood test. I was expecting the HIV to be confirmed, to find out about viral load, CD4, etc but I was not expecting to hear about Hep C. It felt like winning a really shit lottery… all my numbers came up… and then there’s the thunderball!
ME: So what happened next? Were there more tests or did you go straight onto treatment?
ADAM: My CD4 count was just over 200, which is really low. I started on ATRIPLA for the HIV just a month after my diagnosis. They also put me on antibiotics, which were really scary – I’m allergic to the one they usually give out, so they had to give me one that is normally used for people with leprosy. It was really strong and gave me upset stomachs, so that freaked me out even more.
ME: So that was January, we’re now in June – how are the two strands of treatment going? Let’s start with the HIV.
ADAM: Well, the HIV treatment is much better now. I was on ATRIPLA for the first two and a half months but I did not like it. I had very vivid dreams every night… mine tended to be like really heightened sitcoms, but sometimes they were thrillers. But the reason they took me off ATRIPLA, is because my liver function was very elevated.At one point, it was more than 1000% of what it should normally be, in a non-Hep C infected person. So now I’m on Truvada and Raltegravir - three tablets a day total, but not tied to sleep – it’s wonderful! I have an undetectable VL and my CD4 was 370 last week.
ME: What about the Hep C?
ADAM: Before I got to meet with the consultant, I had to do a series of tests…
The first step was going for an ultrasound. (Yes, just like pregnant ladies). It was me, and a corridor full of all these sweet hetero couples, they were all loved up, and waiting for their first scan. I felt totally awkward, as I didn’t bring a lady with me and obviously I wasn’t there cos I was with child. The ultrasound was normal, but I found out I have two gall stones (again with the random unexpected health news!).
After the ultrasound, they sent me on for another test, called a Fibroscan. It’s kind of like sonar, they hold the device up against your tummy and it ‘pings’ your liver. Based on how quickly the pings come back, they can get a reading of how fibrous your liver is. If your liver is damaged (ie, scarred), then it is more fibrous, and it takes the pings longer to come back. Unfortunately, the Fibroscan results were inconclusive. There are 4 levels of Fibroscan ratings: 1 is that your liver is fine, 4 is that it’s damaged – I was in the 2-3 ‘indeterminate’ range. However, they think this could just be because the ATRIPLA was causing such heightened liver function, that my liver was swollen.
ME: So what’s the next step?
ADAM: So the consultant says that I have two basic choices. I can start treatment straightaway or wait 3 to 5 years, and see if any new treatment options become available.
I’m going to wait to start treatment in about 4-6 months. I have a few big projects I have just started that will finish by then — I do a lot of creative work, and have finally just adjusted to being HIV+ and into a good routine with those meds… so I kind of want to get through a few big things, before dealing with the side effects.
ME: What is the treatment as it stands? What are the side effects?
ADAM: Right, the treatment lasts for 48 weeks. For the 12 weeks there’s one pill once a day, there’s one pill you take every day for the entire 48 weeks, plus a weekly injection for the the each week for 48 weeks. All on top of my three pill a day HIV treatment.
The side effects of Hep C treatment are very strong, they can include anemia, a rash, depression and mood swings. However, they will normally treat the side effects, rather than withdrawing the Hep C treatment, if this is possible - which tells you how seriously they take the need to treat the Hep C.
ME: How’ve you felt about sex since both of your diagnoses in January?
ADAM: Sex is complicated. For the first few weeks, I was not interested in it at all, I was really worried that I had just gone off it entirely, but I’d got myself in such a mess, it wasn’t really even a concern.
I usually barebacked before, but now that is especially fraught. I used to think “oh, if I do end up HIV+, then it’s OK to bareback with other poz guys” - but that is really not the case when you have Hep C.
Given how many profiles on websites like BBRT now mention the “my last Hep C test” I’m sure I am not the only one who’s been dealing with it, and of course, whoever I got it from either didn’t know their status, or they did and carried on regardless.
ME: Have you told many people your Hep status? If so how has it gone down?
ADAM: To be honest, no I haven’t. It was really down to you and a few other openly HIV+ tweeters that I got up the courage to get tested, and face it all. I have told one or two good mates, who I used to have sex with and they have been supportive.
ME: There seems to be a lot of stigma attached to Hep C, especially among HIV+ gay guys. Have you felt that?
ADAM: I think part of it is down to ignorance of what is actually involved in treating Hep C, and in part down to a double standard where guys who are HIV+ and bareback (and, in many cases, use drugs recreationally as part of the fun) will then get all worried about getting Hep C, but not enough to curtail any of the activities that would put them at risk.
You see it all the time on hook-up websites – guys have pictures of themselves getting barebacked and fisted, they put they are positive and use drugs, but put in a note about their last Hep C test date which is often six months ago or longer. You have to wonder how much risky sex they’ve had since then.
ME: Finally, how much did you know about Hep C before you were diagnosed – compared to now? Was it on your radar?
ADAM: I knew Hep C was out there, but to be honest, I didn’t think I would get it. I had been into fisting for a while, but had been very careful about who I’d let up there. I didn’t really know much about the treatment, but I did know that it was generally treatable. I had known of at least 2-3 guys who were HIV+ who got Hep C, had the treatment and cleared it so I guess I wasn’t really worried about Hep C.
So yes, it was on the radar, but I wasn’t especially worried, and I knew that if I ever did get it, it would be treatable. But I had never considered the possibility of HIV and Hep C co-infection, or finding out at the same time. And I didn’t realise quite what all was involved in adjusting to treatment, and to the reality of the diagnosis.
Thank you to Adam for sharing his story with us, if you’d like to know more information about Hepatitis C you can visit the Hepatitis C Trust’s website http://www.hepctrust.org.uk/ and follow them on Twitter at @HepatitisCTrust
On a daily basis I get maybe thirty or forty emails from people reading this column or people visiting my website. Some are asking for support, others asking questions about HIV, a few are even hate-mail (the crazies are everywhere) – and an alarming number telling me that they’ve never had a HIV and/or STI (Sexually Transmitted Infection) screening.
Of course I always handle these messages sensitively. I suggest that they should go and book themselves in for a full STI screening and even provide a link to the Terrence Higgins Trust website where they can pop in their
postcode and find a clinic near them. But the whole exchange often leaves me baffled and concerned. Many of these people are in their mid-to-late twenties – how they have got this far in life (presumably having sex along the way) and never having had a check up?
Is it simply a case of sticking their heads in the sand or is there something more going on here? Having spoken to some of them in more depth there’s definitely some ostrich like behaviour for sure, for some ignorance really is bliss, if you don’t know something is wrong then you don’t need to worry about it – but for others it’s a fear of the testing process itself, and this can only be due to lack of education around the topic.
Going for a STI screening really is not that big a deal. Honestly. I went for one only the other month (I go every six months – and so should you if you’re sexually active). Here’s what happened:
I arrived at the clinic at about 10am. I sat around watching Jeremy Kyle in the waiting room until I was called through by a doctor. They ask you a few simple questions:
Why’ve you come in today? “routine testing”,
Do you have any symptoms? “none”,
Any pre-existing conditions? “HIV-positive”.
After that I head back to the waiting room for a couple of minutes for a spot more Jezza (turns out he wasn’t the father). Then a nurse calls me through to one of the other rooms. She takes a couple of throat swabs (say “ahhhh”), a tiny swab from the end of my penis (it does pinch a little, but it doesn’t hurt), and a swab from my ass. Another nurse comes into to take a couple of vials of blood and then I’m given a little bottle to go put a urine sample in. I’m good to go. That’s it! takes about 45 minutes, one hour tops. They’ll text me any results in two weeks time.
(If I didn’t already know that I was HIV-Positive they would have also offered a HIV Rapid Test, which gives you a result in 15 minutes)
It’s incredibly important that each of us get regular STI screenings. Most sexual health charities recommend twice a year or more frequent if you’re more sexually active. Whilst you may not have any symptoms you may still carry any number of infections without even knowing it. I myself had absolutely none of the ‘flu-like’ symptoms often associated with HIV and only found out at one of my regular screenings.
Getting checked out doesn’t just mean that you’re looking after yourself, it means you’re showing respect and looking out for those who you sleep with – after all you’d hope anyone you slept with to have been checked recently, wouldn’t you?
So if you’ve never been checked out, or maybe it’s been far too long since your last test perhaps today’s good deed could be calling up your clinic and booking yourself in for a little MOT. Don’t know where your nearest one is – sorry, that’s no excuse. Head over to THT.org.uk and click ‘Sexual health’ to use their ‘Service Finder’ tool.
This Thursday (21st March 2013) is LGF’s ‘Sex Tips Live’ night at the Eagle Bar, Manchester.
Hosted by the handsome Martin Coops Cooper the night promises to be a fun filled affair in game-show format – it will test how much you know about sex, safer-sex and how to get the most out of your man! There’ll be fun, games and prizes – not to mention alcohol. Plus visiting hunks from Manhunt.net on the premises. Oh and I’ll be there – in leather. What’s not to like?
The bar opens at 5pm and the fun kicks off around. The fun and games start around 8pm. Entry is free.
Come along, you just might learn a thing or two
For directions check out The Eagle Manchester’s website
For more on the Lesbian & Gay Foundation (LGF) check out their site.
See you then,
It’s been a little while since I was a student, six years ago to be precise (oh I feel old), but I was honoured to be invited down to this year’s Student Pride 2013.
For a lot of attendees Student Pride will be the first ‘Pride’ event that they ever go to, so it’s important that the organisers get the weekend right, and that they have done.
There are multiple events, with a little something for everyone. For those that are old enough there are clubbing nights, with special performances from the likes of X-Factor’s Lucy Spraggan, Class A and Capital FM’s James Barr. During the day there are job fairs, theatre productions, live music and debates.
There will also be sexual health advice and FREE rapid HIV testing available courtesy the good people from ’56 Dean Street’. Make sure to stop by and check your status, it only takes a few minutes and could save your life and the lives of anyone you play with.
Student Pride 2013 runs from 1st – 3rd March 2013 in Brighton on the South Coast of England. If you’re a student and 16 years ago or more you can GET YOUR TICKETS HERE!
See you there!
It’s 12:59 and I’m sat in the waiting room at the GUM (Sexual Health) clinic for my six-monthly check up. Thing is this isn’t just any GUM clinic however, this is the clinic that I was given my HIV diagnosis at nearly a year and a half ago. I haven’t been back since, until today.
Don’t get me wrong, I’ve been getting checked out every six months (not that I’ve had any sex worth a damn to really warrant it), but I’ve made a point of going to other clinics to avoid having to come back here. But today, the day I’d set aside to do some Christmas shopping and get my end of year STI tests done, this was the only clinic that had free slots.
The waiting room is the same as it ever was, grey and clean, clinically clean – the same bleach smell is stinging my nose, just as it did at 9:00am on the 4th August 2011. Repeats of Top Gear are playing on the TV. The memories of being sat out here nervously awaiting to be called into that small room are coming flooding back. The same feeling of anxiety is sweeping over me – but this time for no real reason, I’m only here for a general check-up.
Calm down Sam. Calm down.
14:54 nearly two hours later and I’m done. 75% of that was sat around in the waiting room, apparently they were working very unstaffed today. That couldn’t be helped.
I’ve been prodded, up top, down below and round the back. I’ve had blood and urine taken, such fun. Almost knee’d the poor nurse in the face as she did the penile swab – NOT FUN.
I’ll get results via text message in a week, not expecting anything out of the ordinary, I mean I’ve barely had any sex at all for months now. MONTHS. But better to be safe than sorry as they say. I was so glad to get out of there though, I just don’t like what time period of my life that clinic waiting room represents. No comment on the staff at all though, lovely people.
When were you last tested? Was it too long ago? Maybe you should make it a new year’s resolution? After all – what’s a little time out of your day for peace of mind?
Here’s to peace of mind, or what little mind I’ve got left!
Hello? Is this thing on? Good…
Today I’m talking about Gonorrhea, I’m sure you’ve all heard about it at some point or other, it’s commonly known as “the clap”.
Gonorrhea is one of the most common sexually transmitted sexually transmitted infections (STIs) but that doesn’t mean it isn’t something that should be taken seriously.
First up let’s look at the symptoms, (I hope you’ve not just eaten):
- A white-ish/green-ish discharge from your penis and/or arse
- Anal discomfort
- A burning sensation when you pee
- Inflamed foreskin
- Painful testicles and/or prostate gland
- A white-ish/green-ish thick discharge from your vagina and/or arse
- Anal discomfort
- A burning sensation when you pee
- Painful abdominal region
- Bleeding between periods
But just because you don’t have symptoms doesn’t mean you don’t have it, 10% of men and 50% of women are asymptomatic (show no symptoms at all).
How is Gonorrhea passed on?
- Unprotected anal or vaginal fucking
- Unprotected oral sex (including rimming, and going down on a girl)
- Sharing sex toys (without washing thoroughly or using a fresh condom each time)
- Fingering multiple partners (without washing thoroughly between each)
What happens if I don’t get it treated?
- In girls it can lead to Pelvic Inflammatory Disease
Which can lead to fever, vomiting, abscesses and infertility amongst other things.
- In guys it can lead to a very serious and painful infection of the testicles.
How do I get tested?
- The most common methods of testing are a penile/anal/vaginal swab. A urine sample may also be taken.
What’s the treatment?
- Unlike most bacterial infections which are treated with oral antibiotics in the form of pills, Gonorrhea is treated by an injection of strong antibiotics directly into one of your ass cheeks.
Hopefully you’re all sensible people out there and going for routine STI screenings at your local GUM or Sexual Health Clinic, but if you haven’t been for a while maybe it’s time you popped down and got checked out. After all it’s not just Gonorrhea that’s out there is it? Don’t forget about chlamydia, LGV, syphilis, hepatitis (A, B and C) and of course HIV. If any of your results come back positive don’t forget to inform any recent sexual partners, if you don’t feel comfortable doing this most clinics will offer to do this for you anonymously.
Your health is in your hands, but you can only look after yourself if you know all the facts. If you need to find a clinic near you check out: www.tht.org.uk/sexual-health/Service-finder
Have a great weekend,
Currently 100,000 people are estimated to be living with HIV in the UK, but an estimated 25% of those are undiagnosed.
That’s 25,000 people who have HIV and don’t know about it! As we come to the end of HIV Testing Week in the UK and approach World AIDS Day 2012 I put some of your questions about getting tested and HIV to Dr Sebastian Winckler from DrEd.
1. Why is it so important to get tested for HIV?
Early testing is vital both for you, and for the people you’re sleeping with.
If you’ve got HIV and you’re getting treatment you can expect to live 40 years longer than someone who isn’t receiving treatment.
If you’re taking antiretroviral medication, you become less infectious to other people. Being aware of your status means you can start putting certain measure in place (such as safe sex)
to prevent transmission, as well as looking after your own health.
2. What stops some people from getting tested?
There are a lots of reasons why people avoid HIV tests, but usually it’s down to:
- The stigma surrounding HIV and AIDs: Despite advancements in treatment, in some communities there is still stigma about being HIV+, so many people feel embarrassed about getting tested. Remember, there is no shame in being HIV+.
- The inconvenience of testing: If you work during the day, it can be hard work finding the time to go.
- Fear: Some people are simply scared off getting a result they don’t want to hear. Remember though, it’s better to get tested and treated rather than making yourself, or others, ill.
3. Where can I get tested?
HIV tests are available free and confidentially from:
- Sexual health (GUM) clinics
- HIV testing centres (Terrence Higgins Trust Fastest centres, for example)
- LGBT Centres
- GP’s and family doctors
- HIV tests are available to buy from:
- Private clinics
- Online doctors services
4. I haven’t had any symptoms, so I probably don’t have HIV, right?
Wrong. Most people will experience a short, flu-like illness about 2- 6 weeks after being infected. This is your immune system putting up an initial fight against the virus and can last for up to a month. But, this can be easily mistaken for the flu and 20% of people don’t experience any symptoms at all.
After this has gone away, you are unlikely to notice any other symptoms for a long period of time. So the only way of knowing for sure is getting yourself tested.
5. Can a test pick up any HIV infection, regardless of when I’ve caught it?
No. A certain amount of genetic material needs to build up in your system before it can be accurately detected by a test. The time taken for this to happen is called the ‘window period’ and this is different for every test.
- The standard antibody (Ab) test will pick up HIV if you caught it more than 3 months ago.
- The combined antibody/ antigen test (4th Generation test) will pick up HIV if you caught it more than 6 weeks ago.
- The HIV PCR test will pick up HIV if you caught it more than 7-10 days ago.
In most cases, you will be given either the standard antibody or combined test. If you test negative for these, it doesn’t necessarily mean that you are HIV negative, because you might have been infected within the last 3 months (or 6 weeks). You are therefore advised to take a second test 3 months later for the all clear.
If you want a faster result you can pay for a PCR test. But these are only offered at some clinics and may cost up to £250.
6. I think I’ve caught HIV within the last few days, what do I do?
If you’re worried that you’ve contracted HIV very recently, as in, within the past 72 hours (3 days) then you should go to your local GUM clinic or A&E department and request emergency PEP treatment.
7. I’m afraid to get tested because I don’t like needles
HIV tests don’t have to be done via needle or syringe, some clinics use ‘Fastest’ Rapid Testing which simply takes a prick on the end of your finger. Other clinics may take oral swabs instead, this method is considered less effective than a blood test however, so some clinics won’t offer it.
8. How long do I have to wait for my results?
That depends on the clinic you go to. Most will contact you with your result (or ask you to come back in for it) within 3-5 days. If you take a rapid test your result will be ready within the hour. Some clinics can take up to 2 weeks however, don’t be afraid to ask when you should expect the results.
9. What happens if I test positive?
First off, a positive result doesn’t always mean you’re HIV+. There is a small margin of error, so all positive results must be followed up by a confirmation test.
If you do test positive for that, then the doctor or nurse who informs you of your result will set up a meeting with a specialist who can assess the stage of your infection and talk to you about relevant treatment options. You’ll be put in touch with local HIV support groups who can help you cope emotionally, and make you realise that a positive result is not the end.
Thirty years on and HIV is still a problem in the UK, but it is no longer a death sentence. There is help out there and the earlier you get tested, the better your prospects. Whatever you do, make sure you get tested this HIV Testing Week.
Some charities that can help:
Happy Friday to you lovely people,
Today, Friday 23rd November 2012 marks the start of National HIV Testing Week here in England. This is the first time such a large initiative has been run to encourage the people of England to go out and get tested.
National HIV Testing Week runs from Friday 23rd November to Friday 30th November, finishing just before World AIDS Day on Saturday 1st December.
The initiative is being run by the Terrence Higgins Trust, the UK’s largest HIV charity (who are celebrating their 30th birthday this year) and supported by a whole host of other organisations such as BASHH, BHIVA and the HPA.
Many people are put off going for HIV test by a fear of needles or having blood taken, but the fact is most clinics these days use rapid testing known as FastTest which involves a simple prick on your finger and you’ll get the results within minutes.
Annie Lennox was interviewed this week for ITV News about her views on HIV and testing in the UK, she said:
“We’re still struggling with the issue of stigma, fear and ignorance, There are many people that now, actually need to get tested. Friday 23rd at the end of the is the begining of National Testing week here in the country and we’ll be encouraging people to go get tested and find out their status… Go and get tested, find out your status, then you can know what you’re dealing with.” You can watch the full interview here: http://vimeo.com/53871991
Boris Johnson, The Mayor of London said:
“London is home to almost half of all people living with HIV in the UK, but a quarter of them are unaware that they carry the virus. It is vital that people who might be at risk get tested, not only to reduce the risk of transmission to others, but to ensure that they get the life-saving treatments that are available”
Even if you’ve been tested recently, or are HIV+ why not help promote National HIV Testing week via your facebook or Twitter using #HIVTestingWeek and encourage your friends to go and get tested. The sooner you know, the sooner you can take control of your health and protect those around you.
Enjoy your Friday and weekend!
Lots of Love,
I know i’ve not posted in a while, sorry about that. Things have been a bit topsy turvy this end.
Firstly I got ill, ended up with a severe bout of the flu which resulted in me collapsing and hospitalisation – it took me a while to recover from that one. Then I was busy preparing for an interview for a “dream job” which I subsequently didn’t get. After that I fell into a bit of a depressive pit, and just as I was starting to come back out of it I found out that a friend from London had died which threw me right back into my hole of despair.
Nearly two weeks later now things are starting to look up again, I’m going to take a week to go visit some friends on the continent and I’ve started the job hunt again. I can’t help but think that all of this would have been so much easier if I’d had someone at my side, to hold my hand and give me cuddles – being single sucks, but hey that’s where I’m at right now.
In the next week or two the latest edition of Attitude Magazine will be out, with my interview of Edo Zollo – an amazing photographer who’s built a project around HIV across the UK, so watch out for that. I’ve also got some interesting collaborations with Gaydar coming up – but I can’t say any more than that.
Sorry it’s a bit of a depressing post, but I always said this blog would show the ups and the downs. Hopefully next time you hear from me it’ll be about something more positive (if you’ll pardon the pun).
Look after yourselves,
A few days ago I had the pleasure to meet a lovely guy with whom I was lucky enough to spend the night. Before anything even started to happen he told me that he’d recently contracted HPV. I was incredibly impressed that a) he’d been so upfront/honest with me, and b) he’d managed to tell me before I’d told him my HIV status.
So we had a chat about our various issues, both starting and ending with H and ending in V but all in all quite different conditions. Although I thought I was quite clued up on Sexually Transmitted Infections (STIs) I really didn’t know all that much about HPV. He explained a little, as did I about HIV.
Yesterday, being the curious soul that I am, I decided to do a little research into HPV. I’ve heard it mentioned here and there, especially into vaccinating school girls but that’s about it. I did some googling, I spoke to a sexual health nurse and my HIV consultant and below are some of my findings.
- HPV (Human papillomavirus) is the virus responsible for warts.
- There are currently 120 known strains of the virus.
- HPV is the most commonly transmitted STI in the entire world, (second in the UK behind Chlamydia)
- Approximately 80% of the population will contract a genital strain of HPV in their lifetime, with the 20-24 year old age being the most prevalent, although most will not show symptoms.
- Condoms provide some protection, but not complete protection as they do not cover the entire genital area.
- The human body will clear most HPV infections within 2 years naturally.
- Worldwide 5.2% of all cancers can be traced back to the HPV virus (largely anal and cervical cancers)
I asked my consultant whether I should get vaccinated against HPV and he told me that I’d have to pay to have it done privately as I don’t fall under the current NHS vaccination remit – and that it’d likely be wasted money as he’d bet I’ve already been exposed to at least one strain in the past.
It’s amazing such a common virus, one that will reach approximately 80% of us at some point is so unknown isn’t it?
Just another reason to go get checked eh? For more information check out the NHS page on HPV
All the best,