Living with HIV and hep C co-infection and haemophilia

For most people, coping with HIV is enough of a problem in itself, but when you throw in a lifetime disorder such as haemophilia, and then add hepatitis C virus to the list, it does complicate things.

I was born with haemophilia, so it's something I have known all my life, and something that I have grown up coping with. I've never known anything different. The damage to my joints caused by internal bleeding has left me with chronic arthritis, which impairs my mobility and causes daily pain.

I was diagnosed as HTLV-3 positive, as HIV was known, in 1985, and given little hope of a future, along with over 1200 others with haemophilia in the UK. There was no pre- or post-test counselling offered and very little advice. The only thing I was told for certain was that I wouldn’t have long to live.

In 1992, I was told I had also become hepatitis C virus positive, through the same route of infection as my HIV – contaminated Factor VIII, the treatment I took to prevent internal bleeding.

I was told that HIV would cause my death many years before hepatitis C would be a problem and advised not to worry about it.

By 1998 I had numerous HIV-related illnesses, a very low CD4 count and an extremely worrying increasing viral load. I started antiretroviral therapy, which was a turning point for me, not only in addressing my HIV, but also in contemplating the effects of my other conditions.

Protease inhibitors have been shown to cause increased internal bleeding in people with haemophilia, so they were not an option. I was also concerned about the effects any drugs would have on my liver and the impact they may have on my hepatitis C. My hardest task at the time was finding information about co-infection. The HIV organisations knew about HIV and the hepatitis organisations about hepatitis but neither seemed to know much about both viruses in combination.

I started treatment with a regimen of nevirapine and Combivir, which have luckily worked well – I am still on the same regimen six years later. However, four months into this medication, alarm bells were ringing about nevirapine and hepatic failure. My liver function test results had escalated since I began HIV treatment and I was in turmoil, worried that although one set of drugs were working well against the HIV, they might be causing increased hepatic problems. Again I struggled to find information, running back and forth between two hospitals and three different consultants – who never met each other.

Eventually, my liver function test results reduced. They were still abnormally high, but were now at a level that wasn’t scaring me, or my doctors, too much.

The HIV drugs were working, and for the first time in 15 years I actually thought I might have a future. The advent of pegylated interferon and ribavarin gave me hope for treating my hepatitis C. I wanted to start treatment and agreed with my doctors to start a trial. I had weighed up the consequences, read as much as I could about what to expect and talked to other people who had undergone hepatitis C treatment. I discussed with my hepatologist and my HIV consultant, as well as both sets of pharmacists, what options were available and what possible HIV treatment changes could be made if needed.

I told most of my family and friends that I was to start hepatitis C treatment and planned my life so that I had time to cope with side-effects. By the time the trial was due to start, the hospital ethics committee had decided to exclude people with HIV. This was a devastating blow at the time, and didn’t help my relationships with my doctors. The same hospital that had infected me with both viruses wouldn’t give me the opportunity to try and treat one because of the other.

I heard many stories about the horrific side-effects that some people were having on this medication and by the time pegylated interferon was licensed, I had my reservations about trying treatment. By now I had more questions. I have hepatitis C-genotype one, which is the hardest to treat, needing twelve months' of therapy and still giving the poorest results. I knew that AZT and ribavarin were causing problems for the majority, and now I was scared about changing my HIV treatment regimen because it was working so well for my HIV. I didn’t want to jeopardise the success of my HIV therapy, to have twelve months of hell and only a 25% chance of success if I endured the treatment. It all seemed too much of a gamble.

All my illnesses concern me. My arthritis hurts daily, I have to inject Factor VIII when needed, my twice-daily visit to my pill box reminds me, as do the nausea and the night sweats, of my HIV – and my liver throbs at times. I don’t know what the future holds, but I am hoping that hepatitis C medication improves before my liver deteriorates. It’s a big gamble, but the last 20 years have also been a gamble, against all odds. I have been crossing my fingers and trying to stay informed along the way, and I will continue to do so.

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The bus of doom

By Caroline

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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.