Patent rules are still stopping us helping our children, and this time it’s personal

I arrived at Oxfam towards the end of its big Make Trade Fair campaign on global trade rules. One of its core figures was Romain Benicchio, who just got in touch with this piece about how one aspect of that campaign has become all-too personal.

One of the major illustrations of the rigged rules and double standards that shaped (and still shape) international trade was the WTO TRIPS agreement. This is mostly about the rights of big Pharma, with a few passing thoughts for access to medicines in developing countries or health as a public good. Patents before patients all the way.

Gospel according to Kevin (Watkins)

Part of the campaign aimed to ensure that developing countries retained the right (is policy space still a thing?) to import generic medicines when patented versions were too expensive for their health systems.  After several Ministerial Meetings and dozens of TRIPs councils, an amendment was finally agreed in December 2005 to allow states to use compulsory licences to import generic medicines.

Not that it seems to have made much difference for patients in poor countries. Despite the amendment, big pharma and developed countries kept pushing for strong patent protection through a combination of litigation, political bullying and regional/bilateral trade agreements. In parallel, Pharma resisted attempts to make its R&D model and pricing policies more transparent.  Though it seems some progress was made on this during the last World Health Assembly.

Fast forward 14 years later and I am now working on humanitarian standards with Sphere. I am having an intensely personal moment of MTF déjà vu, sitting in a meeting with a doctor in Geneva, talking about my 7 year old kid, Robin, who has Cystic Fibrosis. As you would expect, my kid gets great care and treatment from the Swiss health system. His doctor talks about a promising new medicine, Orkambi, which the first to tackle the underlying cause of the disease. But she is also quick to point out that this drug is not available in Switzerland. Negotiations on medicines prices are far from being transparent but word on the street (paywall) is that Vertex Pharmaceuticals, which produces the pill, is asking for more than €150,000 per patient per year. At that price, the agency negotiating on behalf of the Swiss government does not see enough value for money, and patients are left in limbo.

Trade negotiators on their way to the WTO TRIPS council

Patients not having access to a patented medicine because its price is out or reach for the national health system? I have not worked on access to medicines for ages, but this surely rings a bell….

Meanwhile, Vertex is doing very well, with a market valuation  that went from $7bn in 2012 to $45bn in 2019 and, to quote their CEO, “a nice problem of accumulating cash very rapidly.” And did I mention that Vertex has not only built on original research funded by the US Cystic Fibrosis Foundation, but were also subsidised for years by the same group to develop their CF portfolio?

Fortunately, despite the best efforts of their trade negotiators, states have somehow retained the right to address such systemic failures. Compulsory licences, as advocated by CF patients in the UK or cancer patients in Switzerland, are one option. Except that you would be surprised (or maybe not) at the number of officials and health experts who are not even aware that this is a perfectly legal option to pursue.

Profit pills are now available globally.

In the meantime, the recently created CF buyers’ club, which plans to import a much cheaper generic version of Orkambi from Argentina, is probably the best option for CF patients, as long as states and pharma keep arguing about prices. I am not holding my breath on this as Vertex and the Swiss Health agency have already been negotiating for more than 3 years ….

In any case, my 3 major lessons so far:

1. Anecdotal evidence gathered from my recent personal experience suggests that the patent system and pricing policies of pharmaceutical companies are still very much rigged against patients, wherever they are.

2. Patient groups and health professionals certainly tick a lot of boxes when it comes to influencing the debate on pricing vs. access. They have the credibility, legitimacy and public support. But there is a strong reluctance to question the grand scheme of things or to even talk about drug prices. Some of it can be explained by the support provided by pharmaceutical companies, who are investing a lot of efforts to keep patients groups on their side. But not only. There is not enough understanding of the limits of the existing R&D model. As a result, few have the confidence to publicly question high drug prices. At least, this is very much the case in the CF community.

3. Finally, always listen carefully to knowledgeable colleagues in meetings and teleconferences. You never know, you might need the expertise at some point in the future (with special thanks to Mohga and Rohit, among many others).

Update: some good news on this story, at least in the UK.

Top featured image: The Medicines for life‘ stunt in Victoria Plaza, London 2006. Crispin Hughes.

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4 Responses to “Patent rules are still stopping us helping our children, and this time it’s personal”
  1. Excellent blog Romain. I do hope that your child can access the medicine that will improve his life.

    The blog clearly illustrates the fact that the failure of the current R&D system-based on patent, is global. That is why the High Level Panel on medicine and human rights, convened by Ban ki Moon is still important and its report is really worth reading.
    Yet we still hear “but pharma has to recover the cost of R&D” and similar claims. We need to publicise the fact that high price is not about covering cost of R&D or financing future R&D but it is about sheer greed and maximising the profit for companies and their shareholders. Years ago before Oxfam started the cut the cost of medicine campaign, I went with Michael bailey to meet domestic policy makers in a developed country and one of them said to us not to go about the intellectual property system because it was the heart and blood of pharma. He advised us to ask pharma for some donations to poor countries! I wonder what this gentleman thinks now if his own child has cystic fibrosis and the price of Okambi is much higher than himself or the NHS can pay!
    Will UK-based NGOs realise that they need to continue campaigning against pharma greed and govts lack of action to put patients before companies’ profit?
    good luck with

  2. Mathieu M.

    Getting big pharma to cut prices on fat cash drugs is probably a long political game (worth fighting). I have the feeling that things could change more quickly via patients associations and direct personal action (drug import) even on the verge of the current regulation (since it could bring the press attention).

  3. ken shadlen

    I certainly wish you’d post more on this topic Duncan!

    Romain I hope your child can receive the medicine. Note that the drug is available from an alternative producer in Argentina because vertex has, so far, been unable to obtain a patent in Argentina, which shows that, for all the attention we pay to global/international rules on intellectual property, what happens nationally, i.e. how countries adopt the rules locally, still matters, a lot.

  4. Pete

    Without a profit motive, who would have developed Orkambi and got it through testing? I would love there to be an international, non-profit making and effective pharma industry, but it doesn’t exist. Without the current model there would be no new drugs at any price. I hope the cost of Orkambi drops rapidly and is available to your son and others, I assume the company are aware that a lower price will lead to increased volumes and they are still negotiating their way to that price (which will still be beyond most people in the world) – I hope they do that quickly. It’s a pretty awful business model, but it really is better than nothing, although it must be awful for you and your family at the moment.

    I have a friend who worked as a bio-chemist in drug development – after 20 years there he realised that none of the projects he’d worked on had turned out to be successful. The income from “fat cash” drugs has to cover the costs of many more failures.