Access to life-saving medicines is not a luxury, but a human right.
~Canadian HIV/AIDS Legal Network
To me, the above statement is one of those things that sound like a no-brainer. Put another way, if I were to ask you whether you thought a person's income should determine whether they live or die from something like HIV/AIDS, then I think you would see that the answer is nothing but obvious. But here I am, in Canada, writing this post, because there is a very real danger that members of my government think that this isn't such an easy decision after all – that maybe wealth and business interests do matter when dealing with such ethical choices, and that there is a hierarchy where certain lives are worth more than others.
Let me backtrack a bit, and provide a little context. I'd rather not write a rant, emotional and heart wrenching as this discussion can be – I'd prefer to rely on reason, and not on rhetoric. I want everybody to understand why this is an important issue, one that deserves coverage, and one that deserves our involvement. More importantly, I want everybody to understand why the right thing to do is obvious.
To start, let me mention the letters and numbers that make up the label, "Bill C-393." Keep them in your head – at least for a moment. If you're the sort that prefers hearing at least a quick definition, then this one might work:
Bill C-393 aims to reform CAMR and make it easier for Canada to export affordable, life-saving, generic medicines to developing countries.
~Canadian HIV/AIDS Legal Network
If you're thinking that this is a Canadian thing, then think again. Other rich countries are watching how Canada will behave. There's a few in Europe, and apparently even China is curious. In the U.S., the topic appears to be quenched, but the behaviour of the Canadian government could catalyze dialogue. And if you're not from a rich country? Well, you might actually have lives that will be affected by it, millions of lives even.
Here's the problem in a nutshell: the developing world is heavily burdened with a variety of diseases, many of which are causing massive numbers of suffering and deaths.
This is understandably big. It's a huge global challenge, and there are many reasons for why it exists and why it is difficult to both comprehend and fix. However, the presence of effective medicines is not one of the reasons. There is medicine out there that can help, and there is also a flow (sometimes slow) of discoveries that make these medicines better and more effective. In the case of HIV/AIDS, there are drugs that essentially turn the disease from a death sentence to something that is chronic and manageable. I can't overstate how significant that piece of information is: it tells us that people do not have to die from HIV/AIDS.
So what's the issue?
The issue is control without regard for doing the right thing: This is essentially about patents. It's not that patents are bad, but rather that patents can be bad. As you probably already know, patents are a service provided by government to protect an inventor, such that the inventor has an element of control over how their innovation/product gets used. This is generally a good thing, because ultimately it provides order to a process that would get very chaotic very quickly should the patent not exist. However, sometimes the inventor isn't the best person to make decisions about control. Sometimes, the inventor doesn't have the best information to take stock of a situation, or sometimes there might be a moral argument where monetary performance should not take precedent. In other words, sometimes, there are special circumstances where you could say it is reasonable that this control is tweaked.
To illustrate this, here are some hypothetical (and not so hypothetical examples):
1. You are a company that recently received your patent, so that now your drug is being sold for $1500 instead of the previous $10 pricetag.
2. Your country has experienced a series of anthrax scares. The company that holds the patent for the most effective drug against infection from the offending bacterium, sees an opportunity, and decides to jack up the price.
3. Someone has declared war on your country. To defend yourself, you would like to utilize a particular product. Unfortunately, it is under a cost prohibitive patent and therefore out of reach.
4. There is an impending nuclear power plant meltdown, and there is technology that would be incredibly useful to mitigate radiation contamination and poisoning. However, your resources are already stretched because of the utterly horrific effects of a 9.0 Richter Scale earthquake, and this technology is too expensive at the scale that is required in such an emergency.
5. There are markets where your life saving drug is not being sold because no-one can afford them anyway. However, the drug (which could be a matter of life and death for millions) could be made at a cost (i.e. a generic) that makes it accessible in these markets, but if and only if, the patent over them is adjusted.
Here is my point. In all of the above cases, you would like to live in a civil society where the government can step in and forcibly change the patent, because in every case, there is an element of morality involved. And guess what – governments can do this and they do! It's called a "compulsory license," and they exist for this very purpose.
In fact, even the WTO is on board with this idea. They recognize that in some circumstances, such as those pertaining to global health, there needs to be an understanding that using such compulsory licenses is both necessary and an obligation. In fact, if you have a hankering for the legalese that outlines this for patents over essential medicines, you need only look up info on the Doha Declaration.
Canada actually took this to heart with a bill that came into force in 2005. Often referred to as "Canada's Access to Medicine Regime" (or CAMR), it was an effort to put into action, the principles and details provided by the Doha Declaration. It was a way to try and enact compulsory licenses for the home production of generic drugs so that more accessible drugs could be produced. It was a good gesture.
Unfortunately, this initial attempt was flawed. The process was simply way too complicated, contingent on an army of legal expertise to navigate, which was all the more problematic because many of the actors involved did not have the means or access to do this. Indeed, the bill seems to contain a paradox in it, in that it can be interpreted as logically impossible to use. If you look closely, there's a "you can't do B until you do A" and a "you can't do A until you do B" error in the details (see question 9 in this document for more details).
It was also very inefficient in that the compulsory license was always a one time affair, one order affair, with specific amounts that could not be changed despite possible reassessment of needs, only good for one country, etc, etc, etc. Indeed, in the six years that the law has been available, there has only been one successful case where drugs were actually made and delivered, and there is ample evidence to demonstrate that this process was difficult at best. In fact, when somebody asked me today how difficult things are, the best description I could come up with, is that is it "catastrophically high maintenance."
Which (finally) brings us to "Bill C-393." This bill is basically "the edit." Its sole purpose is to address the things that made the previous bill so ineffective, and at its heart it allows a more streamline and efficient way to issue these compulsory licenses so that production of these generics is more feasible.
No brainer right?
"Oh, but it's not that simple," they say. "There are many counter arguments," they say. Only these counter arguments tend to sound like this:
Q: Shouldn't we focus on other aspects of the problem. Like health infrastructure, or public education for HIV?
A: Hmmm… Let me get this straight. A government can only do one thing at a time? Nevermind the fact that passing this bill doesn't actually cost the taxpayers anything. If anything, the foreign aid that we do provide will likely have greater bang for its buck.
Or maybe something like this:
Q: Wouldn't these changes effect the pharmaceutical company's bottom line, which in turn will effect R&D funding, and drive the home costs of medicine up?
A: The language is pretty clear in that these are generics that can only be sold in certain markets. These markets happen to constitute a very small percentage of pharmaceutical revenues (we're talking single digits here). Oh yeah, plus you get royalties from doing this anyway. Also, there's nothing stopping you from making your own generic version, so that you can enter the market yourself. Indeed, all evidence would suggest a possible gain in bottom line. Plus, the R&D argument is totally a red herring. Sneaky.
But what kills me, is that even if there is a reasonable and say unforeseen cause for concern, the Bill has a freaking "sunset clause" which is basically something that gives all parties a "we'll see how it goes, in case it's not working" escape route.
All to say, that because of this kind of political and big pharma semantics, there is a very real likelihood that the Bill will be struck dead in the next few days in Senate (it was passed by the House of Commons last week, but it's the predominantly Conservative Senate that presents the biggest obstacle – you can see how last week's vote looked according to party lines). Worst still, there's also the possibility that the Canadian government will choose to avoid voting on it altogether, all because of an impending election call. Here, there's a danger of government "saving face" by choosing to ignore it and in doing so, C-393 gets killed by association with a new election.
Boingboing readers, to put this in perspective (and to use internet vernacular), let me just say that both scenarios would represent a facepalm of the highest possible order.
So… What can you do?
Well, for starters, you can lend a hand by speaking out. Retweet this blog post, write about it yourself. You should definitely send an email to Prime Minister Harper and a few of his key Members of Senate by using this ridiculously easy Avaaz page. If you've got something meatier to say, how about copy pasting this entire list of emails, and let the Canadian government know how you feel. If you're not Canadian, do these things anyway, and then make this issue pertinent in your own country. This is an urgent matter, and for Canadians, we only have a few days left to advocate. It's really an amazing chance for Canada to lead the way.
You can also immerse yourself in this cause and get as much information as possible. You can check out organizations such as the Canadian HIV/AIDS Legal Network, which has all sorts of great documents including this informative FAQ.
If you're a university student, you can check out your local UAEM chapter. If you're a Grandmother, you can hear what Grandmothers to Grandmothers have to say. If you only speak the language of hip hop, maybe just listen to what K'naan has to say. Better yet, check them all out, or join these groups and volunteer your time.
And through it all, never never forget: "Access to life-saving medicines is not a luxury, it is a human right."
