Ingrate I am

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. 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 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 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 used to treat hypertension, kidney disease, auto-immune diseases and congestive heart failure. 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.