World's Fair

(Reprinted from Boingboing)

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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.”

Comments

  1. #1 mad the swine
    March 17, 2011

    And through it all, never never forget: “Access to life-saving medicines is not a luxury, it is a human right.”

    No, it’s not.

    All genuine human rights are negative rights, not positive rights. (Wikipedia explains the basic idea.) You don’t have a ‘right to life'; you have a ‘right not to be killed by other people’. Beyond that, how (and even whether) you live is your responsibility. You don’t have the right to force other people to help you – if you tried, you would be violating their rights.

    Think of it this way. If you needed a liver transplant, would you have the right to forcibly take a liver from someone else? Of course not. If you have the right to free speech (as you do), are you allowed to force people to listen to you? Again, of course not. So why do you think it’s acceptable to force people (or companies) to provide medication to other people against their will?

    This is not to say that I disapprove of providing medication to impoverished AIDS patients. Saving lives is a wonderful thing. But it would violate the rights of the pharmaceutical companies (which means it would violate the rights of all the individuals involved with them) if their patents and profits were taken by force by the government, even for such a noble cause.

  2. #2 S.L.
    March 17, 2011

    Just a couple of thoughts.

    For one thing, patents do not exist to give inventors control of their invention. They exist because R&D is risky and expensive, and if the inventors do not have an opportunity to profit from their invention and recoup R&D costs, private R&D would not happen.

    What you are saying then is not very different from forcing any company to sell whatever they’re producing (say water purification systems or food or whatever) below cost. Now if doing so would be in its own interest as you seem to suggest, then by the principles of the free market, they would be willing to do so. Since they do not, we can only conclude that they are losing money on this. What this means then is that rather than distributing the costs of aid (something that does not immediately benefit the country and is completely non-essential) evenly among the population now suddenly the pharma companies, farmers, or those that sell water purification systems have to bear a disproportionate amount of the burden.

    By all means send aid. I daresay most people agree with sending aid. But don’t put a disproportionate burden on pharma companies if at all possible, especially if this is not any national emergency.

  3. #3 kermit
    March 17, 2011

    This is why I would like to see our US tax dollars spent on pharmacological research. Train students, let universities develop the drugs, make the licenses available at nominal fees, or even waver them for humanitarian reasons. It would be cheaper for society at large to pay the same through taxes than to let others pay for the R&D, then charge enough for profit for years afterward.

    Why should a company have the right to control life-saving means, materials, or processes simply because they discover something first? I would not make a private company distribute their product for free; I would simply say that you can’t own the description for a molecule, or genes in a living organism.

    Making a farmer distribute the product of his hard work is *not the same as letting other people farm.

    The idea of patents was to encourage the distribution of ideas in society, not to make maximum profit for those who have the resources (labs, lawyers, legislators, etc.).

  4. #4 Fina Taldago
    March 17, 2011

    I keep waiting for the punchline here.

    Part of the problem with getting people to take action when called on to like this is that people communicate the situation so poorly.

    If a company has a choice of selling the product at a price above the manufacturing cost vs. not making the sale, which if it were true would become apparent during the bargaining process that the buyer and seller engage in, they would choose to provide a license unless they are being irrational.*

    Where is the evidence that they are? Essentially, out of every negotiation in which the buyer can pay the manufacturing cost, the buyer will walk away with a license. Unless there is something defective about the bargaining process or the company it trying to make an example to future prospective buyers or something.

    What this sort of law would do is just strengthen the position of the buyer at the expense of the seller, not allow licenses to people who would otherwise not have them.

    It transfers money from the buyer to the seller, essentially. How is that good and fair?

    If you want to do that for some reason, you should be compensating the seller. To not do so is to make them alone foot the bill for your social justice project or whatever you are trying to accomplish here.

    Social justice is great, but the cost for such projects should be born by everyone, not solely by people who just happen to have invented useful things.

    Morality only comes into the situation when e.g. the seller is wealthy and the buyer is poor and the negotiated price is so high that e.g. the buyer has the choice between semi-starvation plus life saving drugs, or eating and no drugs, in which the former choice is better but only just, and the profit to the wealthy is large.

    In other words, if you compare the high profit vs. low profit situation, in the high profit the wealthy are exploiting and harming the poor to get money from them that the poor need, but that to the wealthy is worth next to nothing. Which is obviously immoral.

    But this basically just comes down to trying to correct the rich poor gap, or trying to compensate for the relative worth of money to someone who is rich vs. someone who is poor. This needs to be done in a much more global and comprehensive way, getting at the root of the problem, not just for drugs.

    * Suppose you exclude the possibility that product will get smuggled from one market to another, reducing sales in the high profit market, or incorporate the estimated cost of this happening as part of the cost of the contract (like manufacturing cost) to the seller.

  5. #5 Vince LiCata
    March 17, 2011

    Dave,

    Thanks for this post – and the related content on Science Creative Quarterly. I watched from the US as this bill went through in Canada the first time, and was amazed that it resulted in essentially no activity – due, as you point out, to it’s being so poorly written that generic manufacturers were basically inhibited from practical application of the altruism at the heart of the bill. I remember that Stephen Lewis was all over this the first time through.

    I’m glad there are such staunch supporters here (e.g. kermit) and in the BoingBoing comments, but at the same time it’s sad to see many of the same old comments about protecting the research investment of big pharma, and effectively about “why should my taxes have to pay for the poor?” — Many humans have evolved beyond believing in a free market economy, and like Medecins sans Frontieres, and like proponents of liberation theology and Paul Farmer’s “preferential option for the poor”, now believe that access to essential medicines is a viable human right. It’s so frustrating to watch the slow pace of moral/ethical evolution. It requires so little of a shift in perspective to be altruistic from a position of privilege.

  6. #6 R E G
    March 17, 2011

    I’m not a scientist; I’m an accountant.

    As far as I know nothing prevents the current patent holders from manufacturing and selling the generic versions.

    Sam Walton did not make a billion dollars selling a few items at a big markup. He made it selling millions of items at a small markup.

    If all the AIDS victims in the world had access to these drugs at a small markup the drug companies would net just as much as they do now – selling a few items at a big markup.

    The insistence that drug companies maintain the same profit margin per dose in Africa where huge percentages of the population is infected is genocide plain and simple. If any of these people think they will not be held accountable they are fools. People may be poor but, thanks to the internet, they are no longer ignorant. They will know where to lay the blame.

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