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Ingrate I am

13/10/2015
AbbVie's pills

Little pellets worth many times their weight in gold.

About a month ago I finished a twelve week course of medication that should cure me of the hepatitis C I’ve been carrying for almost 35 years. I won’t know for sure that it’s worked until my final blood tests next March, but so far it’s looking good. Very good.

At the start of the course I had 1.3 million copies of the hep C virus in every millilitre of my blood. For the past ten weeks I’ve had no detectable virus. Given the sensitivity of the test that means less than ten copies per ml. That’s not a guaranteed cure. It would take only one surviving copy to bring my infection back to its previous level within a few months and as anyone who has had herpes or shingles can tell you, viruses can be very cunning at hiding out in obscure recesses of the body and reactivating when you least expect them. Nonetheless it’s an excellent sign.

If I am cured it didn’t come too soon.

After my initial acute infection, acquired from unsafe drug injecting, the virus sat relatively quietly in my body for over 25 years, slowly munching away at my liver and slightly impairing its functioning while not producing any obvious symptoms. But over the past seven years the scarring on my liver has gone from F0 (negligible) to F3 (widespread and severe). The next stage, F4, is cirrhosis, the first irreversible step on the path to serious illness and, eventually, terminal liver failure. Even if my liver is good for another decade, hepatitis C also puts me at significantly increased risk of several other nasty conditions, such as non-Hodgkin lymphoma.

Up until recently the only treatments available to me have been the combination therapies based around interferon and ribavirin. Interferon is an unpleasant drug used in cancer chemotherapy with a host of serious side-effects, not all of which clear up when you stop taking it. These treatments last six months to a year, have a high dropout rate due to adverse reactions and work less than 50% of the time for those infected with the virus genotype I carry. They’re also strongly contraindicated for someone with my history of autoimmune disorders, bipolar and suicidality. A friend of mine was probably killed by the drugs that cured his hepatitis C.

But in recent years a whole new class of drugs has been deployed against the disease. Drugs that not only have a much higher likelihood of clearing the virus (upwards of 90%) but also a shorter duration of treatment and far more manageable side-effects.

The drugs I took are Ombitasvir, Paritaprovir, Ritonavir and Dasabuvir. They were supplemented with the more traditional Ribavirin due to the advanced fibrosis (scarring) of my liver. For me the side-effects included fatigue, breathlessness, inability to concentrate, absent mindedness, gastrointestinal upsets, a dry, metallic tasting mouth, mood swings and disturbing dreams. A cake-walk compared to what I could have expected from the old treatment. A month after finishing the course most of those effects have subsided, though my digestive system is yet to fully recover and some of my blood indicators (e.g. hemoglobin, platelets and thyroxine levels) are still a bit out of whack. My liver functions, however, are back to normal for the first time since 1982.

The main drawback of the new drugs are their price. More than A$100,000 for the course I took, which is way beyond my means. Nor are they currently subsidised under Australia’s Pharmaceutical Benefits Scheme (PBS), though that’s expected to change in five years or so; which probably would have been too late for me.

Luckily I’m one of the 400 world-wide beneficiaries of the drug company’s ‘compassionate dispensation program’ and received the entire course for less than $50. But do you think I’m grateful for the magnanimity of AbbVie Pharmaceuticals? Nope. Not a bit. As far as I’m concerned they can go fuck ’emselves.

Don’t get me wrong. I’m extremely grateful to the neurologist who referred me, the immunologist who wangled me into the program and the entire Viral Hepatitis Clinical Group at Newcastle’s John Hunter Hospital who monitored and supported me throughout. But AbbVie, like other big pharmaceutical companies, are a bunch of price gouging criminals who should be put out of business and have their few useful functions nationalised (or even better, internationalised). After all, in advanced countries with publicly funded healthcare systems it’s ultimately the taxpayer who is picking up the tab anyway. The huge increase in drug costs in recent decades are the main reason public health systems worldwide are fast approaching financial meltdown. In more backwards countries, such as the United States, the public pay even more through premiums to health insurance companies and the social costs that come with having a large contingent of sick, impoverished, desperate people unable to access affordable healthcare. It’s no wonder life is cheap in places where a perfectly treatable illness or injury can send anyone from the middle class spiraling into chronic poverty and the already impoverished into permanent disability or death.

It costs less than $100 to manufacture the medications I took but drug companies justify their exorbitant pricing by claiming it takes over A$1 billion to bring a new drug onto the market and that outrageous markups are required to fund ongoing research. Critics, however, point to the highly ‘creative’ accounting methods used by Big Pharma to arrive at that estimate, calculating the true cost to the companies at $100-250 million per drug. What’s more, around two thirds of that expense doesn’t go into R&D and compliance costs at all, but into marketing their medicines to consumers and prescribers; often inappropriately, deceptively and illegally.

AbbVie is a spin-off corporation of Abbott Pharmaceuticals. In listing the new company Abbott not only bequeathed them patents on their recently developed hepatitis C drugs, but also with liability for an estimated A$4 billion in future fines and lawsuits Abbott would have incurred for illegally promoting drugs such as Depakote for unapproved (and often unsafe) uses. Not a single Abbott executive was charged over these abuses that likely cost many people their lives. So patients, insurers and public health systems are subsidising Abbott in their ongoing criminality. Pharmaceutical companies consider the penalties for being caught breaking the law a cost of doing business. A cost they pass on to us all.

Anyway, the truth is that drugs are not priced according to their cost of development, manufacture, marketing (legal and illegal) plus a reasonable profit margin. That’s not how the ‘free’ market operates. They are priced at whatever the company thinks people are willing to pay. In the case of life saving drugs that’s basically every cent they can squeeze out of their captive customers.

In 2007 the Thai government announced it would provide life-saving medicines to citizens who couldn’t afford them, so Abbott decided to increase the price of its HIV drug, Kaletra, more than 300% to US$2,200 per annum in Thailand (it’s much more expensive in first world countries). That’s about the same amount an average Thai wage earner makes in a year. When Thai officials responded by allowing the sale of generic copies at a fraction of the cost Abbott replied by not only pulling the heat-resistant version of Kaletra off the Thai market but by refusing to allow them to import six other vital medications. They also threatened to lodge a patent infringement case against Thailand with the WTO which could have seen the country’s economy exposed to multi-billion dollar penalties in fines and trade sanctions. Needless to say the Thai government soon folded under the extortion of these multinational gangsters and as you read this many Thais are dying because they can’t access up to date treatment for their HIV infections. They’re also at increased risk of infecting others – especially if they turn to Thailand’s lucrative sex industry to help fund their healthcare – guaranteeing an ongoing demand for Kaletra for many years to come.

The hepatitis C community is particularly ripe for drug company price gouging.

Many of the those currently becoming critically ill from hep C contracted the disease in the 1970s and 80s during youthful drug escapades or from contaminated blood transfusions. A high proportion of them are now successful and respectable business people or members of the comfortable middle class who would like to live long enough to enjoy their retirement and watch their grandchildren grow up. They can afford to pay the $100,000 ransom AbbVie has put on their lives or, alternately, use their considerable lobbying power to ensure governments pay it. The real cost is passed on to those who can’t access treatment or to less powerful patient groups who lose out due to the opportunity cost to healthcare systems.

But I’ve got nothing to complain about have I? Thanks to AbbVie’s generosity I paid a pittance for a state of the art therapy that may extend my life by decades.

Generosity my foot.

Despite its lofty labeling there’s nothing the least bit compassionate about the program I benefited from. It’s simply another cynically pragmatic exercise in high-powered marketing, akin to a seeding trial.

Seeding trials are designed to get clinicians accustomed to using a particular treatment, recruit them as advocates to their colleagues and promote loyalty among patient groups in the hope they’ll pressure governments and regulators to make it more widely available. In Australia that means listing AbbVie’s treatment regimen on the PBS, quite likely at the expense of even better drugs that are now in the process of coming onto the market. This is something we’ve seen again and again. Expensive drugs that are less effective than alternatives receiving preferential marketing and subsidies thanks to the ability of drug companies to mobilise political pressure from doctors and patients. It’s a perfectly legal practice that costs both money and lives.

So no AbbVie, I’m no more grateful to you than I am to the less ‘respectable’ international drug syndicates who imported the heroin I was using while giving myself hepatitis C in the first place. And if you expect me to fall into line with the worshipful sycophants who will pressure authorities to give your drugs preferential market access as you gouge unconscionable amounts from those able to afford it you’ve got another thing coming. This isn’t the first time I’ve been dependent on criminal organisations and it’s unlikely to be the last. But I don’t have to like it. Nor you.

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From → rant

20 Comments
  1. Good to know you got cured of the dreadful hep C parasite (which I have living with me) and the sinister alchemists are there hovering like a dark cloud; their profit is suffering and death…

    Like

    • Aw shit tiramit. You too?

      I wonder how many others worldwide AbbVie and its ilk have over that same barrel. And how many they’ll drop into it for the sake of profits.

      One piece of good news for you is that unlike Thailand, India has thus far resisted most of the pressure on them to enforce first world drug patents against its own residents, though they are steadily being locked out of other developing country markets they previously supplied affordable drugs to.

      I’m told that Indian generic drug manufacturers are already gearing up to produce the new range of hepatitis C treatments. So the next time you’re there it might pay to ask a friendly, plugged in GP what your options are and when they might improve.

      A rider for you though. I and several other participants in the Newcastle AbbVie program saw significant temporary rises in our blood pressure. In my case it jumped from about 125/75 to 160/95 at one point. That was completely undocumented in the list of possible side-effects provided by AbbVie, but to be fair it may not have been directly due to their drugs. It may have been an attempt by my body to regain homeostasis in the face of falling platelet and hemoglobin levels. They’re also still learning about interactions with other medications, including ribavirin.

      Like

      • Yep! This is part of my story about low-immune system and PHN sets in. And the story of hep C is exactly as you describe, I must have been 22 or something – I remember I went yellow for a few days then it ‘disappeared’ – but it didn’t, has been with me 46 years as a virus munching away inside.
        So if the PHN hadn’t occurred I wouldn’t have thought about it. Now I’m spending most of my free time going to different kinds of medical clinics here in Chiang Mai and also in India. I’ll be back there in around 10 days and I’ll look into who, what, where, concerning the new range of hep C treatments, you’re speaking about here.
        Otherwise it’s an impossible price. I can see how ‘AbbVie and its ilk’ are focused on insurance companies that have incredibly high premiums to offer that kind of cover – it would out of my range. Now it seems do-able, thanks for the tip, I wouldn’t have thought about it, even knowing that all the over-the-counter meds in India are really cheap. And the policy they have in India of straight away getting on the wrong side of global business because they can copy and do it themselves and look after their own people at low cost. It never occurred to me that hep C would be there too of course. There’s a reluctance, I think most of us are unwilling to admit we have it.
        So there’ll need to be some discussion with whoever it is I eventually find in Delhi and the thing about temporary rise in blood pressure taken into consideration. It’ll take some time. I’ll get back to you when I know more. Grateful for your post here and the info.
        T

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        • And the story of hep C is exactly as you describe, I must have been 22 or something – I remember I went yellow for a few days then it ‘disappeared’ – but it didn’t, has been with me 46 years as a virus munching away inside.

          I was 20 when I got mine. As you can see from this partial account, I didn’t let it faze me at the time. Heck, at 20 you’re immortal.

          Like

  2. Really great you had the chance to get yours cured, I’m going to spend some time tomorrow browsing through the link contents about your uncle, just for the fun of it and I need a bit of laughter these days of constant headache. That said, I’m going to crash out now with my sleeping meds and Neurontin and Lycra and see you in the morning…

    Like

    • Lycra?
      You must wear some pretty kinky pajamas.

      Like

      • Yeh, willing to go to any lengths… Lyrica 25mg (pregabalin). Just been through a few Divinyl pieces on YuoTube following on from your links. Great, thanks. Now another day begins…

        Like

  3. For Fox Sake permalink

    Ohhhh, now I get it! You did this trial to extend your life so you could keep raising
    Cain with these corrupt pharmaceutical mobs. I was 19-20 when I copped EBV in Hamilton,
    New Zealand of all the bleeding places in the world!! *sigh*

    Like

    • Doesn’t everyone need a purpose in life?

      If someone wants to keep me alive they can damned well suffer for it. Just as soon as I’m done with the woman who inflicted life upon me in the first place.

      Like

      • For Fox Sake permalink

        You’ll never be done with the woman who inflicated life upon you, dude. She’s
        a zombie. Didn’t you read the fine print before you came back?

        Like

        • The bastards got me before I learned to read.

          Surely there’s a cooling off period.
          Phone my lawyer! Page Dr Nitschke!

          Like

    • Hey, I just realised Epstein-Barr virus is named after a man and a woman.

      Every feminist should make a point of becoming infected to show her solidarity with the sisterhood.

      Like

    • For Fox Sake permalink

      Generosity my foot.

      Didja know there’s a peak in Sri Lanka called Sri Pada that is
      a shrine to a footprint of Buddha?

      I reckon somewhere there is a way cranky Grollo.

      Like

      • Yeah, but the colonialist Christians forcibly converted it and baptised it Adam’s Peak.

        Like

        • For Fox Sake permalink

          Let you into a little secret: my ex-husband was the artist’s model for that painting.

          Like

        • Now don’t be nasty.

          A Thai girlfriend once assured me that a very small penis is no impediment to an intimate loving relationship. Still, I’d have preferred she didn’t have one.

          Spare a thought for those of us with the opposite problem. Thank god for drug companies.

          BTW, did you know there’s a bird called the Ox Pecker?
          I wonder how it gets off the ground.

          Like

  4. For Fox Sake permalink

    Did you know there’s a bird called the Ox Pecker?

    Indeedy I do. The ox pecker inspired a famous eulogy,

    Friends, Romans, countrymen, lend me your ears;
    I come to bury Caesar, not to praise him.
    The weevil that men do lives after them</i

    Like

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