Remarks for Health Action International 40th Anniversary
These were remarks I delivered as part of a panel to celebrate Health Action International’s 40th Anniversary:
Congratulations to HAI on its 40th anniversary and for all the work you have done to strengthen the voices of advocates and communities, to ensure independent and public health driven policy making, and to promote needs-based innovation and access to medicines. I am honoured to speak here.
I wanted to start by talking about myths. As some of you have read in the book Sapiens, societies are based on useful fictions, or myths, which have allowed groups of humans to cooperate in large numbers.
Myths are also used in many other contexts, whether influencing how countries relate to each other, and for our panel today, for corporations to justify their policies and practices.
The pharmaceutical industry has successfully used two myths over the last forty years. From 1980 onwards, drug companies sold a myth that most governments were free riding off their efforts, and that only patent monopolies could ensure that countries would pay their fair share for research and development. This myth was tremendously successful in justifying the global expansion of intellectual property rights through the TRIPS Agreement, and the success of drug companies to continue expanding intellectual property rights over the last twenty years.
The second myth started emerged right around 2000, as drug companies faced widespread criticisms for their practices, and intellectual property rules were coming under criticism for both exorbitant prices of medicines and a lack of research and development for neglected diseases. Drug companies started to sell a myth that voluntary approaches could solve these interrelated crises.
And even as the first myth never disappeared, the second myth, that somehow drug companies would do the right thing, has taken hold and has put us in the situation we are in today.
The problem is that as civil society, we have not pushed back against this second myth, and arguably made it easier for it to take hold, thereby allowing drug companies to legitimise voluntary approaches to systemic problems. It has also allowed drug companies to be accepted as legitimate stakeholders in global health.
One could argue that however imperfect, measures such as the Doha Declaration and the push back against the pharmaceutical industry twenty years ago was indicative of a real momentum towards accountability — red lines that neither governments not companies could cross — and a sense that overcoming AIDS and promoting access to medicines had to be determined collectively by governments and those living with or at high risk of HIV.
Yet the pharmaceutical industry chipped away at this momentum, and as that sense of ‘never again’ slowly weakened, and as we forgot what led to those initial gains, we, as civil society, have collectively moved towards an approach to access to medicines too grounded in voluntarism — an idea that the drug industry could somehow be co-opted to do the right thing.
The language of win-win approaches was not just espoused by industry, but by all of us, for example in the voluntary license agreements signed by companies, and in the new partnerships to develop medicines on behalf of neglected patients.
I understand the reasons for this approach, and the importance of achieving tangible progress when people’s lives are at stake. I was and still am a part of this. But I have to ask myself, did we sacrifice our long-term goals through these near-term efforts? Were we always clear eyed that there was going to be a downside to win-win approaches to access to medicines? Have we become too focused on solutionism to issues and challenges that do not require solutions, but require political tension and to some extent the messy back and forth of competing interests fought out in the public square?
The win-win approach worked over the last decade because there was no real pain or trade-off for the winners — drug companies and high-income country governments. By that I mean drug companies got their profits and repaired their reputations, wealthy countries could afford to support the response and improve their standing, and low- and middle-income countries got access to low-cost medicines on terms set by drug companies. Yet ‘win-win’ solutions only work when those with power do not have their power or profits challenged, and when the disease itself only affects people living elsewhere. If the more powerful side has to make a sacrifice or may actually lose something — the win-win solution becomes a win-lose ‘free for all’, and as we have seen today, we know the outcome.
And indeed, we have to ask ourselves, what did a decade of trying to move industry in the right direction get us? Companies — new and old — have ripped up the rule book we thought we were playing by. We thought there was a common set of assumptions and norms in how we approach access to medicines, but there was not.
I do think of course that a lot of progress has been made in the last year. We have stopped worrying about being seen as reasonable. We are less focused on representation and perhaps more focused on levying criticism for failures. And most importantly we have made tough demands for systematic solutions — such as for decentralised manufacturing or to introduce a TRIPS waiver.
But of course, it should give us pause that the G20 ended up exactly where it should not have — which is to adopt a voluntary approach to bringing forward new vaccines and other medical technologies in the coming period.
Taking a step back, perhaps the wider issue is if the boundary between the function of civil society and that of governments and institutions has become too blurred. We have jumped through all the hoops they have put out for us — we make the right technical arguments, we compile the evidence, and we even have designed the ideal system for making pharmaceuticals affordable and available for all. Many of us have sought to work within these institutions and governments in the hope that we can make the system work better.
But again, perhaps we need to be less reasonable. We need to be comfortable with sticking out like a sore thumb. And we need to be clear where our participation ends and where accountability for governments and companies begin.
I think it is important to rethink how we work because the challenges ahead will be even more transformative, and more dangerous, as the pandemic recedes from view. In the last few years, big tech companies, and many other tech firms, have slowly emerged as critical participants in our health care systems, for now in the US and Europe, but increasingly in low- and middle-income countries. These companies are not just seeking to work in one part of the healthcare system but all of it — including the development of new drugs and diagnostics, in providing primary care and mental health services, in managing public health surveillance, and in gathering data to improve the predictive capacity of artificial intelligence for a range of purposes, including predicting who will get diseases, when people will get diseases, and who may have already have a disease but does not yet know it.
These are not companies looking to integrate into our health systems, but to disrupt them, and to eventually fashion them into their own image — much as they have done to our media, our political systems, and how we relate to each other. We have to face a whole new range of concerns — of the loss of individual autonomy, of racial bias in the algorithms deployed by these companies, of not understanding how an algorithm arrives at a decision, and the use of data and machine learning to develop ever more personalised products and services that are not appropriate for most people and most contexts.
Therefore, as civil society, our challenge will not just be to understand the language of digital health, artificial intelligence and machine learning, but to build new linkages to civil society groups that have already been addressing the impacts of tech companies in other domains, and returning to my original remarks, to consider how we seek to challenge these companies to ensure that their choices and actions are not those that they want but those that are required.
