Twenty years ago, the world was facing a morally unbearable situation. On the bright side: there was – at last – an effective treatment for people living with HIV/AIDS (PLWHA). Patients in high-income countries could benefit from the antiretroviral tri-therapy, and their life-expectancy was restored. On the negative side: this therapy was, due to the high prices, mostly unavailable in lower-income countries. Access advocates including many PLWHA called for exceptions to patents, in order to bring prices down and scale up treatment everywhere. Countries like Brazil and Thailand,  Malawi, … showed the way, and organizations such as Doctors without Borders also demonstrated the feasibility of treatment in fragile health systems. Meanwhile, the World Trade Organization (WTO) affirmed in the Doha Declaration on the TRIPS agreement and public health (2001) that intellectual property provisions should not prevent Members from taking measures to protect public health, thus providing reassurance that health can -and must- be prioritized over commercial interests.

Eventually, HIV treatment was scaled up – sadly, with a delay of some years, which caused millions of preventable death among disadvantaged communities. Among the factors that favored the scaling up of antiretrovirals in the developing world, were: WHO’s Medicines Prequalification, which since 2001 provides clear guidance on the availability of quality-assured generic antiretrovirals and makes it possible to believe that  everyone in the world can have access to safe, effective, and affordable medicines; and the mobilization of civil society  as powerful  advocacy stakeholders. Activists and PLWHA, often representing grass-roots organizations from the global South and global North, were regularly attending WHO, UNAIDS and other high-level meetings, contributing to designing access strategies, while sharing the voices of those directly affected. Some examples: GMHC (formerly Gay Men’s Health Crisis), founded in January 1982 in New York City, or the Treatment Action Campaign, founded in December 1998 in South Africa; and people like Fatima Hassan, Gregg Gonsalves and Zackie Achmat. There were many more.

Today, we again face a morally unbearable situation whereby  lifesaving vaccines are unfairly distributed globally. Just like when HIV triple therapy became available in affluent countries, the world again seems to lack a sense of urgency to correct the global (Covid vaccine) access gapas soon as possible.  There’s a key difference though: compared with the early years of the HIV crisis, there seems to be much less  space at decision-making levels for the voices of activists, grassroots organizations, and of those who are denied access to the vaccines. To the best of our knowledge, representatives of the under-vaccinated or unvaccinated  communities, and of risk groups in lower-income countries, are seldom or not invited at events where international organizations and political platforms discuss how to resolve the vaccine inequity. While we lack hard evidence for this claim ( here’s a suggestion for social science researchers), it is likely that (almost) all who are attending key (vaccine access) related global events and fora (such as the ones from the WTO, G7, G20 etc. ) have been vaccinated by now, as they are usually middle-aged people or above, and belonging to the economic, political  and/or scientific elites in their respective countries.

True, compared to the early days of the HIV crisis, social media are now a powerful tool for activists and can amplify the voices from the field, in principle at least.  But so far, the calls for vaccine equity launched via social media do not seem to reach and convince stakeholders beyond the world of global health. And yes, there has been a broad-based demand by civil society networks and (former) global leaders and UNAIDS, calling for a People’s Vaccine,  to be considered a global public good and  available to all, everywhere, free of charge.  But it’s not like the most forceful People’s Vaccine proponents get a front seat at many of these global fora. And if they do get a seat, they’re often drowned in sessions with a bunch of other, more ‘mainstream’ voices. The same goes for many of the global (Covid related) ‘governance mechanisms’ in place.  While efforts are now  under way to establish local manufacturing sites for Covid-19 vaccines in countries like Senegal, Rwanda and South-Africa, these policy and cooperation discussions typically include local producers and government representatives, but no (direct) representatives of the affected populations as such, including patients and health care worker organizations.

Against that backdrop, it seems pertinent to ask whether such new partnerships and assemblies have the full moral and democratic legitimacy to design the roadmap for global access to the vaccine, if they lack first-hand experience of how it feels to urgently need a vaccine and not even get close to one. Functionaries, policy-makers, politicians, etc. need to be confronted to the experience of frontline healthcare staff, patients with chronic diseases and other categories at risk in countries with low or virtually no access to the vaccine. Keeping these key witnesses away from high-level platforms, on purpose or not, leads to a(n artificial) lack of sense of urgency, and can even create a  dangerous moral alibi for the elites who are taking technical and political decisions on key issues for global health.  Vaccine inequity is affecting the world along many dimensions  -ethics, politics, economy, health, justice- and those most affected by inequity need to be given voice and visibility, at the highest levels, now.