Intellectual Property Is Costing Me My Life By Rudi Cilibrasi

Permalink: http://www.CopyrightReform.us/archives/82
Posted by Bryan Andrews | Posted in: Articles | August 2008

Mon Jul 04, 2005

In an unbelievable twist of fate, a combination of terrible drug laws, intellectual property laws, and misguided patents and copyrights have come together to prevent me from receiving lifesaving medecine. I need your help to publicize this issue, take it to the mainstream, and let it start the ball rolling to take out this immoral copyright system. The story of the death of my family and my current life-threatening illness, caused in no small part by IP law, is a perfect starting point to bring this into the next level of public discourse. Let’s expose the copyright barons for what they are. It’s not just me; 200 million others are also infected, and 95% don’t know the problem, yet. It could even be you. Let’s become lifesavers.

I am a lifelong computer programmer and open source author. I have contributed to the Linux kernel. I have also worked at Microsoft for a few months. You can see some of the software I am now writing at complearn.org which allows you to do advanced data-mining for free.

I am writing this now to address what I consider to be a very serious matter. It is relevant to the moral basis upon which Intellectual Property is founded. As a scientist and programmer, I am a very technical person and tend to get very involved in my own health decisions. It happens that I was born prematurely in 1974, and received a blood transfusion from my mother who was infected with Hepatitis C (HCV). For those that are not aware, this causes a lifelong degenerative liver disease. Both of my parents have already died young due to its effects, and I am HCV+ as well and have been slowly suffering liver degeneration my entire life as a result.

This concerns IP because some years ago I did some research online about my possible treatment options. In the year 2000 the possibilities were "old, normal" interferon or pegylated interferon, taken in both cases in combination with ribavirin. These are chemotherapeutic type drugs, with very harsh side effects, and you must take them for a year in order to have a decent chance of curing yourself of HCV+. The problem is, with my genotype, 1b, the chances of success using the old medicine were only about 30%. The new medicine had about a 60% chance. But the FDA did not approve the new medicine until years after Europe did, for reasons which are not entirely clear, given the solid research findings in its favor. So I flew to Europe, got the new pegylated medicines for about $25,000 (US) of my own carefully saved money, and flew back to USA.

I spent about 3 months treating myself with this medicine that was not yet approved in USA and then checked my viral counts to find great news: I had lowered my viral count to undetectable levels, suggesting that if I just continued with the yearlong course of treatment, I would probably be permanently cured. What great news!

Imagine my dismay, then, when I received a note from the customs office saying they had blocked shipment of the second half of my pegylated interferon + ribavirin. The reason, apparently, was that there was a patent or IP law problem restricting the European branch of the pharmaceutical industry from selling these drugs to Americans, even if I bought them in Europe with my own money for personal use. I figured it would not be a big deal — I would just explain to the customs officers that this was a life-threatening illness, and they would help me find some way to appeal the block before it was too late.

The big problem is that if you skip your medicine for more than a week or two before the full year, you may as well stop entirely because the virus will almost certainly come back in full force.

So, having explained this to the customs official over the phone, I was shocked to find that it seemed there were no provisions in place to handle the case where an IP restriction is in direct conflict with human life. My life. I am still HCV positive now.

It’s now several years later. My parents have since died and my liver has gotten worse. I would enjoy being around to continue to contribute for free (because I love programming) and would enjoy talking more with all of you about many things. But this will not be possible unless we reframe the IP debate in terms of human-centric goals. It should not be the case that a creative scientist and programmer with a lifelong history of giving away his technological creations for free would be denied the resources he needs to satisfy one of the simplest and most basic human needs — to have his illness treated in the most effective way possible — because of a mere Intellectual Property dispute. It should not be the case that the FDA is allowed to prevent life-saving medicine that is not abusable from being used in the USA. This is a travesty and must be corrected. Because of a rule that contains no exceptions for the protection of life and health, I lost tens of thousands of dollars and have that much less useful time left to earn. Because of this travesty, I am still HCV+.

Want to help? Please see my website hcvaction.org

This whole disaster also begs the question of how should we handle the more general issue of conflicts between intellectual property and basic human rights. More information will be posted on this subject soon. Sometimes it seems like the only people willing to help are those on the "fringe" like Noam Chomsky. Why is Chiron allowed to copyright all the lifesaving medical science relating to HCV? And to lock up development with patents restricting research to the privileged few? I need help publicizing it, and am wondering if Slashdot or Kuro5hin can help save my life here. Patrick Volkerding seemed to have some good luck… What I need is publicity. And there are 200 million other people walking around right now with HCV. 95% of them don’t even know it. Can you help me?

As a postcript, I would like to address a few common questions in advance. Surely the most common reaction is "Why didn’t you move to Europe?"

I did.

This is not the point now, however. As a very privileged young man, I was able to create a job for myself overseas in the Netherlands. I now work as a research scientist. But I feel sorry for the vast majority of people who have already died because they couldn’t do what I did. And those that live outside the USA or EU have even fewer options. Unfortunately, this disease affects the poor far more than the rich worldwide. So even in the richer countries like USA, there is still not much hope for most sufferers.

Another crucial point to realize is that research has been slowed by the copyright-locked HCV research journals. Worldwide, Chiron holds practically all copyrights and has only recently granted licenses for a limitted number of other companies in the world to do any research at all. They have such a massive patent portfolio that it is essentially a virtual monopoly on the world’s most common bloodborne illness. This wouldn’t be bad, except for the profiteering at the cost of human lives. What we need is government intervention to balance business interests against the other shared values of our society. The US government is happy to spend hundreds of times more money on HIV/AIDS than HCV, despite the similarity in US mortality per year. This is unconscionable, and as awareness grows, and people realize what’s going on, it will change.

The most important reason I need your help to publicize this now is because there is one free and simple thing that any HCV+ person can do to extend their own life trivially: just don’t drink alcohol. Think for a moment about this reality: 3% of the world is HCV+, and 95% of these people don’t know it. Let’s assume half drink. Each time they drink, they damage their liver up to four times worse than an uninfected person. And their liver is probably already compromised and running out, but most people simply cannot notice the feeling of a scarified liver until it is too late to do much good. It’s a pity, a tragedy, and utterly preventible. Please, help me get the word out. 10% of HCV+ people have zero risk factors. So if you’re feeling tired, this might even be you.

Many people ask why I haven’t yet taken the year of treatment with pegylated interferon and ribavirin. This is because my genotype, HCV 1b, is resistant to this treatment. Genotype 1 is the most popular in the US. The cure rate for my genotype is about half what it is for others, and the duration of treatment is twice as long. Thus, I would suffer perhaps twice the toxic effects, for half the cost. These toxic effects are not trivial; people suffer permanent joint problems, bone problems, mental problems, and other difficult side effects that are still coming out. Some people have gone completely nuts while trying to do this dangerous treatment. This is sad, considering that right now there are at least two new drugs which seem to cure HCV in mice models and are fairly non-toxic.

We need to realize that the incentive structure we have set up with the IP system and the patents that Chiron holds is in direct contradiction to the higher goal of curing a pandemic disease. Have a look at this epidemic.org website by a US Surgeon General to get another opinion on this pandemic disease. Chiron is not to blame; it has a responsibility to its shareholders. We are to blame, for failing to upgrade our IP system to better serve our needs. As one human being to another, I am asking you: please help the 200 million HCV sufferers by publicizing this.