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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.

THE INTERVIEW:

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

 Love,

Tom
UKPositiveLad

5 COMMENTS

  1. Great interview Tom and a really honest response from “Adam’. I have been poz for a number of years and only recently – a year or so ago now, when my CD4 count dropped to 350 and viral load was over 150,000, did I go onto treatment. I needed to get my immune system up again, as I had to go in for some surgery.

    I’m on Truvada and Raltegravir now as well – three tablets a day total pink and blue. At my last checkup my viral load was 23 (they can now measure it right down to zero in Australia), and my CD4 count is over 950. So I am really pleased with the results of these particular drugs and I have luckily had no side effects. I have not had Hep C and am very careful to make sure none of my sex partners has it either.

    Thanks for a great blog.

    Stuart
    Sydney, Australia

  2. At last a real conversation on co-infection… Which is far better than ‘don’t ask, don’t tell’ attitude on the subject. We should be pulling together as a community than looking at differences. Well done for high lighting the subject. Ps why do we see so many profiles stating that there “not” but no profiles stating that they are? Which is adding to the stigma of co-infection.

  3. The stigma of co-infection is everywhere. As a co-infected gay guy, there are automatically judgements made against me, often incorrectly. There is a an epidemic of hepc within the gay hiv+ community, it is the thought that “well, ive got hiv whats the worst that can happen?”, the knowledge if hepc is lacking out there.
    There are gay men who are hiv+ who will automatically turn down hepc people, much like stuart who commented here, the fact that, with necessary precautions taken its not easy to transmit sexually.
    Its interesting to read Adam’s take on treatment, its not incorrect, but its also not the current standard of treatment. Current approved treatment is either ribavirin & interferon or ribavirin, interferon & telaprevir or boceprevir; this is dependend on hcv genotype.
    Ribavirin is 5 or 6 tablets a day split into 2 doses, it is weight dependent.
    Interferon is a weekly injection.
    Telaprevir is either 2 tablets 3x per day or 3 tablets twice a day, with 20g of fat; for the first 12 weeks.
    Boceprevir is 2 tablets 3x a day, For 44 weeks.
    Treatment is 24 or 48 weeks for ribavirin & interferon, it depends on week 4 results.
    Treatment is 24 or 48 weeks for ribavirin & interferon and telaprevir, again depends on week 4 results.
    Treatment is 48 weeks for ribavirin, interferon and boceprevir.

    There are many trials out at the moment which are reducing treatment substantially in length but also pil requirement. I suspect Adam may be on one of those trials.
    AbbVie, Gilead, BMS etc are are developing oral only once day regimines. Gilead looks likely to be first, though it may be AbbVie.
    Gilead has a new drug now in for approval which will work with interferon and ribavirn to begin with, reducing treatment duration to 12 weeks.

    In 5 years time we can expect treatment to be vastly different from what it is now, being a single tablet once a day for 8-12 weeks. HepC is likely to become quite a trivial disease (for newly infected, those who have end stage liver disease will suffer most). infact BMS said that if all patients globally were treated for hepc with the new drugs that it could be globally eradicated.

  4. A great interview that was interesting and informative to read. I don’t think HIV information and education is as good as it used to be, but Hepatitis information and education has always been extremely poor. Thanks to Tom & Adam for putting this article/post together.

  5. Back in 2010 I joined BBRT for a few months following my HIV+ diagnosis. I have to admit that I was more than shocked by the attitude on the site especial for guys with hep. I couldn’t understand how guys who had HIV could be so offensive to those who also had hep c, especially when they were reckless enough to practice bareback. It’s very depressing (not to mention destructive) when victims of prejudice through it in the face of others less fortunate than themselves.

    Kudos to Tom & “Adam” for highlighting this issue. Your bravery is to be admired!

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