A walk on the mild side

Heroin … will be the death of me. – Lou Reed

I don’t regret my time as a heroin addict. It taught me a lot about mood altering drugs, pleasure and pain, myself and the society I live in. It sure led to some adventures. But it left me with a little reminder I’d sooner forget. Hepatitis C.

In 1981 I contracted what was then called non-A, non-B hepatitis. They didn’t have many tests that could distinguish one virus from another back then. Now we have hepatitises A to G, many divided up in to several genotypes. My HCV genotype is ‘1a’ – the most difficult to treat.

In the pre-AIDS era it was hard to get clean needles in Sydney. A handful of pharmacists sold them – some for outrageous mark ups – but the police were known to stake them out and search anyone leaving who looked suspicious. If you weren’t a doctor or a diabetic just possessing a needle and syringe could land you in prison.

I worked at a pathology lab in Surry Hills run by very humane and dedicated doctors who weren’t particularly concerned about the law. One group of clients were the girls (and occasional boy) from the expensive Touch of Class brothel nearby who were required by their employers to get regular STD checks at the lab. When I explained my situation and that of my friends to kindly old Dr White he immediately offered to supply me with clean needles for free. Unfortunately there was little education to hand about intravenous drug hygiene back then and though we all stuck to our own needles we sometimes shared mixing spoons. That’s likely how my microscopic guests arrived.

Since the 1990s things have been much improved in NSW. Prostitution has been decriminalised, information about controlling the spread of blood-borne disease is easily accessible, and cheap or free needles and syringes are widely and legally available – except in prisons, where they are needed the most.

After its initial acute phase, my hep-c settled down to become a fairly non-intrusive companion. My liver functions were slightly out of whack, but not so as to make me feel ill. Maybe I was more easily fatigued than I would otherwise have been. But that was about it.

On the other hand, available treatments were unlikely to help someone with my HCV genotype, took six to twelve months to complete and had devastating side effects. One of my friends probably died of the treatment for hepatitis C, though he suffered no discernible symptoms from the disease itself.

My personal circumstances make the standard interferon and ribavirin based therapies particularly intimidating. Common side effects include severe depression and a host of autoimmune related problems. On top of my pre-existing bipolar, asthma, hay fever, iritis and ankylosing spondylitis the cure would have been many times worse than the disease has been so far. I decided on a wait and see approach.

But in recent years things have changed.

The deaths of some of my favorite musicians from hepatitis C – Lou Reed and Rowland Howard being just two examples – didn’t really shake me much. I’d expected some other lifestyle related catastrophe to take them out years ago. The loss of sensation steadily creeping up from my toes is a bit more of a worry, but no-one is sure that’s due to the hep. The liver scarring is less ambiguous though. Even though I’ve gone from very moderate alcohol consumption to teetotal my fibrosis levels have steadily risen from zero to three over the past twelve years. Four is cirrhosis. There is no five.

More positively, there has been a revolution in the treatment of hepatitis C. The toxic, interferon-based Rebetron and Pegasys therapies are no longer the only options. Drugs that narrowly target the virus itself have become available. Not only have side effects been greatly reduced, efficacy has leapt from less than 50% to more than 90%.

But there’s a catch. 87,000 of them actually.

The new drugs are hellishly expensive – way beyond my means – and so far our government has declined to subsidise them. It’s a typical bureaucratic false economy. The old therapies cost the government around $30,000 per course – not counting the costs of side-effects – but only work for about one in three people infected with genotype 1a – the most common type in Australia. So the price per cure is as high or higher for the old subsidised drugs than it is for the new ones. I resigned myself to keeping my fingers crossed for a policy change while watching my liver slowly turn to wood.

But last year my neurologist made a proposal (no not that sort unfortunately – she’s very intelligent and attractive). One of her colleagues was getting around the prohibitive prices by running a series of clinical trials. Not on the pills themselves – they passed their phase III trials with flying colours several years ago. He was trying to pin down the more obscure health effects of chronic hepatitis by comparing pathologies of someone when they had the disease to the same person when they didn’t. As it wouldn’t be very ethical to infect healthy subjects for the comparison he was curing infected ones instead. The cost of the drugs would be covered by the funding for his research. After a series of assessments he put my name down as a volunteer for his next trial.

For nearly a year I’ve been waiting to hear whether the trial had been funded and today I got my answer. It wasn’t good. He only received sufficient backing to treat five patients and I wasn’t one of them. But I’d barely had time to register my disappointment when he broke the good news. The drug manufacturer has recently set aside enough free doses for four hundred people worldwide to receive ‘compassionate’ therapy. Almost ninety of those people are in Australia. Thirty-nine are outpatients at Newcastle’s John Hunter Hospital. One of them is me.

So in a week or so I’ll be commencing a three month, twice daily drug regimen that has an excellent chance of completely clearing the virus from my body. What a bargain! It took a two year course of three or more injections a day for me to catch it. Because of my advanced fibrosis the doctor has decided to supplement the basic quadruple drug therapy with ribavirin, which means I could be dealing with headaches, fatigue, itchiness, nausea, weakness, jaundice, bloating, sore muscles, stomachaches, joint pains, rashes, lesions, anxiety, congestion, insomnia, diarrhea, depersonalisation, fever, chills, sweating, tachycardia, mood swings, paranoia, forgetfulness, inability to concentrate and anemia for the next twelve weeks. Hell, that’s practically normal for me. Nothing compared to what interferon would have done over the course of a year.

If this program was really compassionate it wouldn’t be going to middle-aged, first world ex-junkies like me. There are plenty of young, third-world single parents infected with HCV who have poor prognoses due to co-infection, indifferent nutrition and lack of access to healthcare. If the drug company must distribute its largess to Australia it should probably go to prisoners. Prisons are the main loci for contagion in this country so each cure behind bars would result in a greater reduction in future infections. Also, shock jocks would loudly speculate that people might deliberately commit crimes in order to get their disease treated, putting pressure on the government to make the new therapies accessible to all who need them. Still, when I look at recent ultrasounds of my liver it’s hard to put altruism and pragmatism ahead of my own self-interest.