The 2020 global pandemic had the indirect result of bringing discussions about the right to health back into the public sphere. What does the right to health mean and how dos collective action defend it? What is the role of the state -and the role of healthcare systems- in guaranteeing it? In what follows we discuss these issues with Stella Christou, post-doc at the department of Political Science and Sociology at the Scuola Normale Superiore and a member of the Centre for the Study of Social Movements (COSMOS). Stella has worked on collective reactions to healthcare austerity in Southern Europe, collective responses to COVID-19 in Tuscany as well as collective contestations against patents for the COVID-19 vaccines in Europe and globally.

Social movements for healthcare and well-being have a long history and often arise from a specific issue or group of people to grow and create links with broader issues and social sectors.

Health Social Movements represent a broad and heterogeneous category of social movements addressing health, care and wellbeing. They can be single-issue, as you say, and can commence as campaigns reacting to something specific to then develop and solidify as movements. The most successful instances of such campaigns and/or movements have advanced health and human rights, they have contributed to the development of health systems as we know them today and have challenged a series of conceptions about health and illness. To illustrate, I will give you some examples from three different centuries.

In 19th century Britain, we saw momentous strikes and mobilizations concerning working conditions affecting health and safety. Led by the most vulnerable sections of the emergent working class- that is migrant women- these instances of collective action gave way to militant trade unionism and affected industrial reform- including the regulation of child labor. What is more, these mobilizations contributed to the definition of this industrial working class while still in development and radicalization which would lead to the establishment and victory of the Labour Party. It is interesting to note here too that the Labour Party won its first elections largely due to its campaign for a universal healthcare system, that is the National Health System we know and have since copied in many European countries today.

Upon the establishment and development of healthcare systems during the 20^th century, collective struggles shifted their focus towards those systems’ discrimination -on the basis of race, gender, sexuality and/ or class. One such instance is the HIV/AIDS movement, which united and radicalized these communities that suffered the most from the pandemic. However the HIV/AIDS movement was not homogeneous across the globe. In the Global North, the movement brought together members of the LGBT community, relatives and sympathizers, it gave them visibility and orchestrated efforts to destigmatize the virus as well as sexual practices and preferences more broadly. Activists took it upon themselves to educate their milieus regarding the virus, its transmission and progression into AIDS, so as to be able to confront and challenge scientific and political responses to the pandemic. The sum of the above brought attention to the virus and the syndrome and propelled scientific research, giving way to new therapies and treatments. On the other hand, in the Global South NGOs played a much more crucial role exactly due to their rootedness in national contexts. One such example was South Africa where NGOs formed part of the national HIV/AIDS movement and together they challenged the government’s denialism of the pandemic. As such, grassroots activists and international NGOs brought the government to court and organized mobilizations to raise awareness over the pandemic. These networks and concomitant mobilizations helped link poor socio-economic conditions with the thriving of HIV/AIDS and mobilized affected communities and experts alike. Over the course of the 2000s South Africa had marked significant successes in expanding access to therapeutics as well as securing access to preventive schemes.

A more recent example of a campaign-turned-movement is represented by anti-austerity mobilizations targeting healthcare. As we know from recent experience, the European Union responded to the global financial crisis of 2008 with the imposition of austerity measures meant to contain public costs, including those for public healthcare. This triggered long and eventful cycle of contention in many national contexts, which called for the end of austerity. In many countries, but most visibly in Greece and in Spain, those large mobilizations linked austerity to the financial capture of our democracies, and they soon enough branched out to specific campaigns in defense of public healthcare. These campaigns turned into movements themselves, as they spilt over sectoral confines and involved both professionals and users of healthcare. These movements resisted austerity in healthcare, advocated for its negative impact on health, and envisioned reform for more universalistic, comprehensive and holistic healthcare systems.

These are all interesting cases of movements, but they are all so different from each other. Why would you study health movements and activism as separate instances of collective contestation?

I would argue that the aforementioned movements are distinguished by a number of characteristics. First, they were faced with the high political and cultural stakes and the high economic costs implied in the healthcare arena.  Related to that is the role of the state in healthcare provision as, even in the most privatized arrangements, the state is responsible for authorizing and licensing professionals, practices and products related to health and care. As such, Health Social Movements need to have some minimal interaction with the state, as they can strategically use it to gain legitimacy and/or attack it with the risk of being outlawed.

Another characteristic of these movements is the strong and autonomous role of medical professionals in the healthcare arena as they are at once medical providers and advisors, they can act as gatekeepers between the market and the state and can affect policy more than any other professional group.

Finally, and perhaps most importantly, the healthcare arena and the various actors intervening therein are circumscribed by specific legal and bioethical norms which are difficult to reform and/or overcome. Arguments regarding reproductive rights of women or the right to terminate one’s own life are sensitive topics in the public sphere. This can be at once a resource and an obstacle for movement actors, and as such, they need to go to great lengths to figure out appropriate framings, tactics and strategies to achieve their desired goals. So, a way to deepen our understanding of these movements is to look at their interaction with 1) healthcare systems, 2) the state, 3) private actors, 4) medical science and 5) deeply rooted ethical questions of “life and death”.

Speaking of these interactions, I was thinking of your recent work on Access to Medicines. The 2020 pandemic saw the return of the broad issue of pharmaceutical patents and the right to health. Was COVID-19 an opportunity or a threat for movements and campaigns for health rights?

The Access to Medicines movement emerged as a response to the 1995 WTO Trade-Related Aspects of Intellectual Property Rights (TRIPS) agreement, as actors involved in health rights advocacy and defense saw it as detrimental for Lower- and Middle-Income countries. Very briefly, the TRIPS agreement streamlined and internationalized the system of patents which was previously flexible and sensitive to the different capacities of states to purchase health-related products and innovations. This all happened during the HIV/AIDS pandemic. Access to Medicines has since marked some significant successes, mostly in challenging patents for individual drugs in individual states using the so-called flexibilities that allow for the contestation of patents. The most common of those are Compulsory Licensing (that is governmental permission to produce generic drugs without the consent of the patent-holder) and Parallel Importation (that is importing drugs from countries where prices are lower without the consent of the patent-holder). Access to Medicines pushes for these flexibilities either for states to enact them or to threaten pharmaceutical corporations to reach agreements that increase access in individual states. However, these strategies are costly and lengthy, as they demand a lot of legal expertise, they involve serial negotiations as well as court cases can take a very long time.

As such, when the COVID-19 pandemic exploded, Access to Medicines saw a historical opportunity (and threat) for action. Two campaigns were kicked off – one addressing the European Commission and one addressing the WTO. The European campaign addressed the need to ensure access to all, but also highlighted the fact that vaccines were a public good. That is because of their importance in the context of a global pandemic but also because they were publicly developed and produced. As such, health rights were linked to the emancipation of scientific and public knowledge from private interests.

The WTO campaign was initiated by India and South Africa, two countries with extensive experience with TRIPS flexibilities and a large national infrastructure of generics. The WTO campaign focused on the immediate waiving of all COVID-19 related patents for the duration of the pandemic for the whole of the world. This was proposed as a pragmatic solution for the termination of the pandemic, the usual strategy of nation-led initiatives to lift patents for COVID-19 vaccines would take too much time and energies during the health emergency.

Despite the unprecedented attention that the pandemic offered to these important topics, neither of the campaigns was successful. The EU is among the biggest and most profitable pharmaceutical producers worldwide and therefore the Commission throughout highlighted the importance to respect Intellectual Property law, with some adjustments, if and when necessary. At the same time, the WTO waiver as of October 16^th, 2020 was supported by a number of countries and civil society organizations, but was strongly opposed by the strongest member states- that is the U.S, the U.K., the E.U., Australia, Brazil, Canada, Japan, Norway and Switzerland. Two years later, the WTO agreed on some minor concessions for Lower- and Middle-Income Countries, concessions that international NGOs such as Medicines Sans Frontiers and Oxfam condemned as “too little too late”.

The unprecedented pandemic offered some opportunities to re-address health rights and global inequalities and to discuss proposals regarding public publicly-owned and available research, innovations and technologies. However, powerful private interests and their concentration in specific geographic areas, namely the Global North, obstructed the efforts to revisit these issues in the name of public health, even in a moment that seemed as critical as ever.

Though unsuccessful, the campaigns launched as a response to Covid-19 managed to achieve a result in terms of communication…

We could say that the COVID-19 pandemic showcased the capturing of national and transnational institutions by the pharmaceutical lobby. However, even in that environment, the movement managed to communicate the primacy of public and preventive healthcare globally, as well as advance its -often too marginal and technical- critiques to the patent system as allowing the parasitic profiteering of pharmaceutical conglomerates at the expense of public health.

Over the course of the pandemic, it became apparent that the creation of safe and efficient vaccines occurred at an accelerated pace exactly due to the unprecedented collaboration between public and private entities. The m-RNA vaccines heavily relied on prior research conducted by public institutions and received significant financial support from governments. To give an example, Moderna’s vaccine was largely developed in close partnership with the US National Institutes of Health, while nearly all of AstraZeneca’s funding came from public sources. In addition, the Pfizer vaccine was created by a small German research company, BioNTech, which received substantial funding from both the German government and the European Union.

These were all resources, even if discursive, in the hands of patent contesters. They did, however, prove difficult to mobilize. As activists told us, patent contestation is overly technical and legalistic, and it takes a lot of time and expertise to communicate the complicated system of patents, let alone its negative effects for public health. Relevant research indicates how, and contrary to popular belief, the patent system has indeed crashed innovation, as money is going to the protection and acquisition of patents rather than research towards products that could be of public use. In addition, the same studies show that the little money that has gone into R&D goes for drugs that are not life-saving. A famous example of that is the Viagra, which indicates that the pharmaceutical market is motivated by demand in the Global North and not guided by global health concerns. That is particularly troubling if one thinks of global inequalities but also future strategies to tackle pandemics. Another difficulty, according to our interlocutors, was their “competition” with the anti-vax, as patent contesters did not want to feed into existing criticisms to the pharmaceutical industry and, therefore, the vaccine. Finally, and perhaps most sadly, once vaccines became publicly available in Europe, mobilization faltered. We understand, thus, that is was not just the Commission overlooking international solidarity commitments, but also European civil society.

This is why the EU negotiations and the WTO maneuvers went largely unchallenged, despite their detrimental consequences. Let me just add here: even if vaccines in Europe were distributed for free to everyone, our healthcare systems still paid a price. We are still oblivious as to the price of the vaccines purchased, and neither can we estimate whether we were given a “good deal”. In addition, and as negotiations between the Commission and the pharmaceutical lobby concluded that Europe could not export the vaccines it purchased, we arrived at a situation where Europe hoarded vaccines at the expense of other countries. According to the Financial Times, in August 2020, 50,3% of EU citizens had received at least two doses of the vaccine, compared to 2% of citizens in Africa. Most recent calculations- dating back to December 2022- show how the gap persists, despite the WTO concessions and general humanitarian aid initiatives

These opportunities did not suffice to overcome the powerful lobbies and geopolitical arrangements that established and sustain the system of patents. As we saw, the COVID-19 pandemic did not really challenge the system of patents nor the historical gap between the Global North and the Global South. Affluent states had vested interests in the promotion and defense of the patent system, as most of the pharmaceutical industry resides therein, and governments benefit from their taxes as well as the job opportunities they create. We could therefore say that the COVID-19 pandemic showcased the capturing of national and transnational institutions by the pharmaceutical lobby. In many occasions, EC President von der Leyen and EC Vice-President Dombrovskis publicly defended the pharmaceutical industry against the WTO waiver, which they framed as a threat to the broader system of Intellectual Property protection. Having worked on this project regarding IP in pharma, I think that all those topics are of utmost importance: so much for policy makers as much as ourselves. If we want to protect health rights, the rights of ourselves and others, we need to inform ourselves concerning this capturing and consider the inequalities and injustices it fosters and aggravates.