Tales from the organ trade

Imagine that you live in poverty. A chance arises for you to earn a year's salary in one day. All being well, no one will get hurt. In fact, what you're going to do will save someone's life. Sounds like quite a deal. Or at least it does until until you realize that what we're talking about here is selling one of your kidneys. And that it's illegal almost everywhere.

The decision to sell an organ is a stark choice. It speaks so much of all that is wrong with our global inequities. It shouldn't be happening. But, like it or not, it does happen. For many people looking to get out of poverty, the sale of one of their organs is clearly a desperate choice ... but it is also a choice that they are sometimes willing to make.

The illegal organ trade is not for the faint hearted. Sure, it saves lives, but it's an ugly business. Ric Esther Bienstock, the documentary-maker behind the award winning "Sex Slaves" documentary about global sex trafficking has taken on the subject head first and eyes open with her new film, Tales from the Organ Trade. It's getting it's North American premiere tonight here in Toronto at the Hot Docs festival. We sat down with her recently to find out exactly what lay behind her decision to focus on such a moral minefield and to ask what she's trying to achieve.

"I'm not advocating for incentivised donation. That door is shut. But I'd love the film to spark debate" says Bienstock. Unlike Sex Slaves, Tales from the Organ Trade doesn't take any sides. As Bienstock says, "sex trafficking is a very black and white issue". But making Tales from the Organ Trade took Bienstock into a lot of grey areas. "It shook me up," she admits. "When I started making the film I had a very different view from when I finished making the film. I started off thinking, its purely exploitative, period. And that's 90% of how it's characterised in media reports, films, and anything I've seen.... but there are thinkers out there, surgeons and ethicists who think that a regulated, incentivised system is the way to go. And there are people who think it is repulsive and exploitative. So I really have a sense of what they all believe, and why they believe that."

The turnaround for Bienstock was going to countries like the Philippines, Ukraine and Moldova and meeting donors. The fact is, she says, so many of the people she met were not coerced. They actively sought out the brokers who would find them a buyer. "You don't need to coerce people in the Philippines," she argues. If they are coerced, she says, they are, as she puts it, "effectively coerced by their own poverty." And what is more, they are forced into the black market, where there are virtually no protections. "If you think about it," she says, "it's a situation where you have extremely desperate people on both sides, crashing together in a black market." It's a situation ripe for exploitation.

Bienstock took more than 3 years to make the film, crisscrossing the world to talk to the different people involved in the organ trade, from donors and recipients, to the brokers and surgeons that make it all happen. Although these characters are operating outside the law, and are often portrayed as evil, exploitative crooks, Bienstock had little trouble finding them - and again, saw them as much more complicated than the typical black-and-white narratives. But getting them to give their side of the story to camera was much more difficult.

One doctor wanted by Interpol only agreed to be filmed after his mother had approved of Bienstock following a lunch date in Istanbul. Another only agreed after Bienstock had flown to Israel to meet him for coffee. "The first thing he said to me", recounts Bienstock, "is I'm not going to be in your film." He eventually agreed after Bienstock convinced him that she wasn't out to vilify him; she simply wanted his side of the story.

Tales from the Organ Trade ends up being powerful for resolutely avoiding taking sides. Rare among documentaries tackling such sensationalist subjects, it doesn't look to reinforce prejudices but invites us to make up our minds. This may make for uncomfortable viewing, but it's a necessary approach to a subject that often defies conventional ethical logic. As the film's publicity materials put it: "This is a world where the villains often save lives and the medical establishment, helpless, too often watches people die. Where the victims often walk away content and the buyers of organs - the recipients - return home with a new lease on life "

Margaret Thatcher’s unacknowledged grandchild

The death of Baroness Thatcher is dominating today's news. Despite the euologic praises heaped now posthumously on the ‘iron lady’ one cannot overlook one common thread: ambiguity. Yes, she modernized Britain, but for whom? She was a war leader, but what was really gained in the Falklands? She battled constantly with her European friends, but to what avail? Yes, she was the first British female head of state, fairly unprecedented in many countries at the time – but did she leave a legacy to her sisterhood? “Well, yes, technically she was a woman...” was one of the funnier comments on Thatcher’s gender role I once heard.

It is fair to say then that among her legacy is certainly one topic which is close to the interest of this blog. And we hasten to add, a legacy no less ambiguous than all her other ones. She certainly symbolizes and has pioneered many of the political changes which have given rise to Corporate Social Responsibility (CSR) as a new business practice during the last three decades. This conclusion is fairly obvious looking at some of the more historical work on the spread of CSR in Europe by authors such as Jeremy Moon, Daniel Kinderman and others.

Among her heritage we can certainly count the comprehensive privatization of many then state-owned companies in the UK – a policy then also very popular in the US during the administration of her close friend Ronald Reagan. It was her conviction that telecommunication, public transport, water or electricity can be better delivered by private companies and governed by ‘free’ markets’. The attribute ‘free’, by the way, makes me cringe when it gets relentlessly rehearsed today (just listing to BBC World while writing this). Whoever has lived in the UK and has used, for instance, the railways knows that these markets are anything but ‘free’. In many cases her privatization project made a few people very rich and created a monopoly for private companies which resulted in lower quality of services and higher costs to the citizen-turned-consumer.

A second important heritage was deregulation. Many of her reforms here, for instance, created the burgeoning financial industry in the City of London; but it also cut down workers rights, the power of trade unions and a host of welfare state institutions.

The crucial side effect of this retreat of the state of course was that suddenly a huge vacuum occurred. The initial reason why many public services were ‘public’ was that receiving a letter, drinking clean water or having access to affordable transportation was seen as a civic entitlement. And the expectations, once administered by the state, now turned to private companies. The same with abandoned public services: safe high streets, reliable schools,or care for the elderly and poor in many cases morphed into ‘responsibilities’ for private companies. The retailer Marks&Spencer, in explaining their CSR approach, used the slogan ‘healthy high streets need healthy back streets’. It still symbolizes this turn. Thatcher pioneered in the UK what we have seen over the years happening in most other European countries and beyond with some time-lag; and it is for this reason, that the UK became and still is the leader in CSR in Europe.

The legacy of privatization and deregulation again is at best ambiguous, and CSR as it were is the knock-on effect of that. Even the more recent events at the financial markets after 2008 can be seen as the aftermath of the Thatcherite legacy. And lets not forget - the British banking system and indeed the UK economy has been hit quite severely to this day. Deregulation left more discretion to actors in those markets – which encouraged a behavior which has contributed to the financial crisis. Which in turn led to calls for more responsible and accountable corporate action even louder and more demanding today than ever before (think Occupy).

CSR then can be seen as some sort of unacknowledged grandchild of Mrs Thatcher: a knock-on effect of her policies, but certainly not one she would have approved. Her policies were very much inspired by the other big critic of CSR, Nobel Laureate and Chicago economist Milton Friedman. It was a big illusion of the 1980s to think that government can discharge themselves from a host of public services and responsibilities and to expect that the market will happily take care of all those issues. While Thatcher’s idea was to free markets from stifling regulation and to liberate companies to pursue their economic self interest – companies end up having to look after healthcare, education, infrastructure and many more social goods. It is fair to argue, that in the UK – but also in Scandinavia, Germany and France – privatized utility companies are at the forefront of CSR currently.

It is deeply ironic that the person who emphatically claimed that ‘there is no such thing as society’ instigated a renewed sense of social embeddedness and social responsibility exactly in the very place which she went out to free from all such considerations. While her famous statement ‘the lady is not for turning’ remains unforgotten, the turns of history are sometimes stronger than the most resolute renegade – even if they come in the shape of an ‘iron lady’.

Artwork by Rachel E. Chapman, reproduced under the Creative Commons License.

Why India’s Novartis ruling is good for innovation

Today’s news that the Indian supreme court has effectively denied the Swiss multinational pharmaceutical company Novartis the patent protection for its ‘new’ blood cancer drug Glivec (Gleevec in North America) has been discussed controversially in the media. On the one hand, commentators sympathetic to the industry have pointed out that without patent protection a publicly owned company loses its incentive to develop new drugs. Pharmaceutical innovation, so the argument goes, is driven by the hope of future returns. Since development of new drugs is very costly, time consuming and competitive, companies can hardly justify investments when rulings such as today's kill their hopes of recouping the costs through future sales. In short, the Indian ruling "will hinder medical progress" (Novartis press release) and thus kills innovation.

On the other hand, activists and other voices critical of the industry argue that this is a win for all those that have the interest of poor people and their access to affordable drugs in mind. After all, a year’s supply for Glivec for a leukemia patient currently comes at a whopping $70,000, while Indian generics can do the same job for about $2,500! (Generics btw. are drugs, that use the same chemical recipe as the original and can be sold much cheaper as the generics company does not have to cover the R&D costs)  For India, which has the biggest generics industry in the world, this ruling of course has also a very national commercial interest...

What most commentators are missing though in their evaluation of the case is a somewhat minute detail, which however has huge ethical implications. The crucial point here is whether the version of Glivec for which Novartis was claiming patent protection, is actually a ‘new’ drug. What the Indian supreme court in fact ruled was not that Novartis should not enjoy patent protection on their new drugs; they mainly concluded that the new edition of Glivec, for which the company applied for protection, was in fact not sufficiently ‘new’, not different enough from the old version of Glivec, for which the patent had expired.

This points to a well know strategy of the pharmaceutical industry. Rather than fighting generic companies, ‘originator’ companies such as Novartis just marginally change the chemical formula of an existing drug whose patent is about to expire and then pretend to having come up with an entirely new one, for which of course they should enjoy full patent protection.

This, however, is just one trick pharmaceutical companies use in fighting generic companies. The EU Commission on Competition has had an eye on the practices of the industry in circumventing patent law for a long time. Their 2009 report is an inspiring read which sheds an interesting light on the claim, that it is the generics companies that stifle innovation (as rehearsed today on BBC, CNN and the likes).

Basically, companies such as Novartis and other ‘originators’ are using a whole host of ‘defensive patenting strategies’ and the use of ‘second generation products’ ruled out today in India is just one of them. Others include the filing of numerous patent applications for the same medicine (forming so called 'patent clusters' or 'patent thickets'). This is an important tool to prevent competitors in advance to develop new medicine as the potential new drug would already be covered by the patent right filed in advance by another competitor.

All in all, the EU Commission identified a host of industry strategies all of which resulted in numerous "situations where innovation was effectively blocked” (p. 19). So in reality, what Novartis was stopped doing – at least in India – is not so much about innovating for new drugs, but rather one element of a rich toolbox of strategies to stifle and prevent innovation while protecting patents and thus the profits of the company.

After all then, today’s ruling may indeed result in more real innovation. Rather than focusing their R&D teams on insignificant changes in existing drugs which may satisfy the legal team of the company to file a new patent application, Novartis and other pharmaceuticals might take this event as an incentive to actually develop new drugs that address hitherto unaddressed and untreatable diseases. One of the reasons the Bill and Melinda Gates foundation is so active in developing new drugs for the diseases of the poor (such as malaria) has to do with the fact that pharmaceutical innovation is too much driven by potential economic benefits of future drugs. And of course the diseases of the poor are bad for the business case of a drug.

This problem now hits a company whose outgoing CEO just had to turn down a $78m severance package - reacting to public outrage in Switzerland. After all, a company that can afford such golden handshakes for their CEO in the first place can’t be ailing too badly from all those third world generics producers...

(An edited version of this blog was published as an Op-Ed in the Globe and Mail, April 2, 2013).

Photo by Images_of_Money, reproduced under the Creative Commons License.