The Hep C Buyers Club

Last night’s Sunday programme on access to the expensive new anti-viral drugs that cure Hepatitis C – a debilitating and ultimately life-threatening disease that 50,000 New Zealander have, whether know it yet or not – was a good example of how these stories look when they’re not driven by drug company PR.

It featured two people: musician Chris Heazlewood, who has been infected with the Hep C virus for 25 years and is at risk of end-stage liver failure; and Tasmanian man Greg Jefferies, who found himself in the same boat and started a buyers’ club to help others who couldn’t afford $80,000 to $90,000 for a 12-week course of pills. Jefferies sources the anti-virals from countries where they cost a fraction of what patients in developed countries pay and sends them on to people who need.

I know Chris and I’m delighted he is getting treatment. I’m also aware that he had a problem for some time doing something that’s not mentioned in the Sunday report: finding a sympathetic doctor. Many doctors aren’t familiar with the drugs involved and are wary of the idea that the patients would bring them in themseles.

I talked to a GP I know when Chris was in some distress about his dealings with doctors and got some feedback which I edited up as general advice:

    There’s always a risk buying medicines overseas, but the Indian factories supplying their domestic market usually aren’t too bad.

    The way I work, all the HepC patients see a specialist in private or public, have a fibroscan to assess liver scarring, and maybe a liver biopsy as well for the same reason, and then remain closely or loosely in touch with the specialist depending on results and preferences. Sometimes I will do all the monitoring and followup scans, other times the specialist will.

    The old drugs were actually pretty useless (low cure/bad side effects) and lots of people opted not to bother, but the newer drugs are quite different, and I think now all my patients have one way or another have used them (mostly thru trials run by Ed G and Auck Uni).

    The key point to get across is that the type of drug or combination used, and the dose(s), and the course length all depend on the scarring/cirrhosis level, and the HCV genotype. Without this information it is not possible to give the correct course, and gain optimum benefit and chance of cure. This information can only be obtained from specialist gastroenterology or hepatology services.

    If a patient of mine was found to have HepC I would be happy to supervise medication sourced from overseas if:

    - I knew the patient well enough
    - they had been assessed by a specialist as above
    - the treatment plan was written down, plus the monitoring needed

    To do this I would refer them for assessment at the liver unit at Auckland Hospital, or to see a specialist in private, and once I had a letter back with the plan we would go ahead.

    Your acquaintance needs a proper assessment and treatment plan from a Hepatologist, and if he’s got a good relationship with his GP then it really shouldn’t be a problem.

So if you’re in the position of needing this treatment, you should watch the Sunday report – there is some debate about the efficacy of the generic substitutes – and talk to your doctor. If your doctor doesn’t want to talk about it, you will have to find another doctor. The Hep C Information website might be a good place to start with that.

You should also read my Matters of Substance feature on the issue and the blog post and discussion about that.

And finally, here’s a video I took of Chris playing last year with his current project Cash Guitar. It’s another reason we want to keep him around.