Playing with our lives – Big pharma and the new hep C treatments

Many of us already know there are a lot of new drugs for hepatitis C treatment becoming available on the market. Some have already been developed and others are in the final phases of clinical trials. These drugs are called direct acting because they directly target the hepatitis C virus rather than working to boost the immune system. They are superior to what we currently use in every way. They have almost 100% success rates, most only need to be used for a maximum of 12 weeks, work for all genotypes, work for people with cirrhosis, and have far fewer side effects than the treatments we have been using until now. There are also quite a few of them, the first of which are starting to be used.

This is seriously important news for us. More than 50 percent of people who inject drugs in Australia are living with hep C. So it would seem things are looking up for us, wouldn’t it? With only around 1 or 2 percent of people living with chronic hep C attempting treatment every year in Australia, these better treatments could put us within reach of an end to the epidemic. The few liver clinics that actually treat our kind have been putting us off for the last few years, telling us to wait until the new drugs come out. Finally, we can see the light at the end of the long, long tunnel. We won’t have to take a half a year or a year out of our lives while we feel like death from the toxic drugs that have a 50 to 80 percent chance of successfully treating our virus. Treatment for all!!! At least, that’s what the service providers who have been telling us to wait and the epidemiologists would have us believe. “We’ll put everyone who has the virus on treatment and cure the entire lot of them. They won’t be able to transmit it to anyone else and before you know it, hepatitis C will just be a memory.”

Unfortunately, there are a few things that are going to get in the way, and the first of these is the greedy pharmaceutical companies. They know there are going to be a lot of different treatments available, but they’re all being made by different companies. They know they have a short window of time to get their drugs on the market and to beat the competition. They know there are thousands of people who could be treated just in Australia, and believe it or not, Australia has some of the highest treatment rates for hep C in the world. They also know hep C is the biggest cause of liver cancer and liver transplants in Australia. And they know we don’t have time.

Did I mention hepatitis C is responsible for a huge proportion of liver cancer and liver transplants in Australia? That’s not the end of the story. There are tens of thousands of us who have been living with hep C for a long time now. The years of most people living relatively free of complications are over. The numbers of people getting sick and the numbers of people dying have been rising quickly. Deaths from hep C have doubled in just the last ten years and they’re still increasing. I don’t think I’m exaggerating when I say there is going to be an explosion of people, thousands of people, who will die in the next decade if they can’t get treatment; people who haven’t been able to access treatment in time to prevent fibrosis and cirrhosis; people who haven’t been able to access treatment at all. Not only will these new treatments be too late for many of these people, there will continue to be thousands more preventable hepatitis C transmissions.

The first of the new improved drugs that will truly save lives is called Sofosbuvir. It is made by Gilead and is being aggressively marketed around the world. It is already available in the United States at a cost of $80,000 US for a 12 week course. That is about $1000 per pill. A deal with a few companies in India has managed to simultaneously allow Gilead to control the pricing and the countries which are able to access a cheaper, generic version of the drug. The deal will give Gilead and the limited companies involved millions, if not billions of dollars in profit. It also removes the ability of countries to challenge the patent and set their own pricing for generic versions of what is not a spectacularly new drug but it has been marketed to look like Gilead is doing something good for the world of hepatitis C.

At the same time, countries with a high burden of hepatitis C have been left out of the deal with Gilead. These countries, including China, a country with over a million people living with the virus, will have to individually bargain with Gilead, as the US and some other countries have already done, to set a price that Gilead chooses. It is likely that millions of people who need it will be unable to access the new treatments. In many countries around the world, including almost all of Asia, the ‘old’, less effective hepatitis C treatment with peg-interferon and ribavirin is priced at between $7000 to $30,000 US per person, costs that are borne by the patient and are well out of reach for most of the people who need it. These people have been waiting too long already to be able to access treatment and are being left out of contention yet again.

Australia has already started the process of negotiating a price with Gilead. Sofosbuvir recently went before the Australian Pharmaceutical Benefits Advisory Committee for consideration at an undisclosed price set by the pharmaceutical company. The Australian government wants this drug. It will save them a lot of money to treat people before they get to the point of having cancer or needing liver transplants. They probably even care about people dying to some extent. But tens of thousands of people need treatment, and plenty of people are at the point of really, really needing treatment. The application for Sofosbuvir to be made available in Australia was refused because the price was too high and we simply couldn’t afford it for the number of people who need it. It is six months until the pharmaceutical company can resubmit the drug to the Committee, and if they ask for the same price we could easily see the same result. In that six months, one thousand people in Australia will die of complications related to hepatitis C.

For the pharmaceutical company, and in many respects for the Australian government, it’s a numbers game. What will be the cost of treatment, what will be the cost of the drugs, how many people will develop health problems without the treatment, what will those health problems cost the health system, how many people can be treated, etc, etc. Gilead wants to make as much money as it can out of Sofosbuvir before all these other drugs from other companies become available, and Australia is a comparatively rich country with one of the best records of treating hep C. Gilead knows the government want to be able to provide Sofosbuvir as soon as possible.

For us, the numbers are a little bit different. How many more people can I possibly lose? What will I do if it’s me who develops cancer, or my partner? Every single one of those people who gets sick, who dies, is a human being. Every single person is loved. Six months might not seem very long in the scheme of things. But it’s too long for the people who don’t have six months. It’s long enough for another one thousand of us to die. What happens when Gilead come back with the same figure? Do we wait another six months? Do another thousand people die?

And if the Australian government decides to pay the asking price, what will that mean for us? It will mean only a small number of people will be able to get Sofosbuvir, most likely those who are most sick. It will mean if you are not at the point of needing a liver transplant, you sit in the waiting list until you really do need one and only then might you be able to get the best possible treatment. By then it’s usually too late to try the old treatment. Meanwhile, the liver clinics will keep telling us to come back in a year or two when the new treatments will be “available”.

Who says it’s not a war on drug users?

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