Unionize Vaccine Volunteers, by Abie Rohrig
Volunteers for vaccine trials are motivated by a desire to save lives, but without a collective voice and a seat at the table, their altruism will never be fully actualized.
The path to coronavirus vaccine development has systematically neglected the interests of those in the developing world. Rich countries are outbidding poor ones for scarce vaccines, meaning that 9 out of 10 people in the developing world won’t get vaccinated in 2021. Once vaccines arrive, companies plan on enforcing patents in poor countries, further restricting access. And Covax, the most promising multilateral effort toward equitable vaccine distribution, has few conditions to guarantee that vaccines are actually affordable and no support from the US.
These problems could have been avoided if vaccine volunteers — most of whom are motivated by a desire to save lives and reduce inequality — unionized. Vaccine trials are impossible without the participation of thousands of volunteers, giving these volunteers significant leverage. A union of vaccine volunteers could use this leverage to maximize the social value of scientific research, ensure that trials are respectful of the rights and dignity of volunteers, and advocate for fairer distribution of the resultant products. This advocacy would be a natural extension of why people volunteer for vaccine trials in the first place: a 2019 study found that 93% of people cite altruism as their main motivation to take part in vaccine trials. But because vaccine volunteers are decentralized and do not have a voice in when research decisions are made, the altruism of vaccine volunteers is exploited and the world is worse off.
An independent organization of vaccine volunteers that uses labor-style tactics to advocate for accessible vaccines and research that has value for the global poor would be unprecedented, but in this global pandemic when vaccine volunteers have never had more leverage, there has never been a better time for such an organization to flourish and do good.
A proof of concept can be found in the advocacy of 1Day Sooner (where I serve as Communications Director), an organization of prospective volunteers for COVID-19 human challenge trials. (In a human challenge trial, volunteers would be deliberately exposed to the coronavirus to speed vaccine testing, potentially saving thousands of lives.) The National Institutes of Health (NIH) and UK Vaccine Taskforce were slow to prepare for challenge trials until volunteers wrote op-eds, mobilized experts, and hosted events calling on them to do so. By June, the NIH was considering challenge trials, acknowledging that their consideration had “been driven almost entirely by the altruism of potential volunteer advocates.” In August, they announced preparation for these trials due to “pressure from advocacy groups such as 1Day Sooner.” In September, the UK Vaccine Taskforce announced a $42 million investment in challenge trials set to begin in January 2021. Rutgers bioethicist Nir Eyal estimates that challenge trials, which have been used to test vaccines for malaria, influenza, and typhoid, could prevent anywhere between 40 and 320 million years of poverty by accelerating the licensure of vaccines that can be easily deployed in poor countries.
This strategy is scalable for all vaccine trials: a union of vaccine volunteers could influence the decision-making of regulators and researchers to maximize the social value of scientific research in at least three ways.
First, by leading targeted public campaigns toward Pfizer and Moderna to make their vaccines accessible in poor countries. These highly-effective vaccines would not have been licensed without the dedication of tens of thousands of vaccine volunteers. These volunteers have unique credibility to publicly pressure Pfizer and Moderna to take concrete steps to ensure their vaccine is available to poor countries, not just the wealthy west.
Second, volunteers could boycott future vaccine trials until pharmaceutical companies make concrete commitments to equitable distribution. Pharmaceutical giants like Merck and GlaxoSmithKline that have a brutal history of enforcing HIV medicine patents in poor countries will soon need volunteers to test their COVID-19 vaccines. A standing army of prospective vaccine volunteers could discourage its members from taking part in a vaccine trial until pharma companies make binding commitments to make their vaccine available to all.
Notably, vaccine volunteers would not need a monopoly on trial participants to make an impact. Vaccine trials are small enough that if a couple hundred volunteers were to back out of a trial, it would significantly disrupt data collection and jeopardize the existence of the entire trial. This means that even a relatively small union of volunteers would have significant leverage to make demands for equitable vaccine distribution.
Third, volunteers could play a key role in encouraging scientific research into vaccines for neglected diseases that disproportionately plague the developing world. Right now, research to prevent male-pattern baldness gets more funding than malaria. An organized group of vaccine volunteers could lobby for more vaccine research to prevent diseases like malaria, schistosomiasis, and leishmaniasis. A union could work with researchers to expedite recruitment for high-impact trials.
Study after study shows that vaccine volunteers are primarily motivated by altruism. But this altruism is continuously exploited by pharma companies who sell vaccines to the highest bidder. It’s time that vaccine volunteers join forces and collectively bargain. Well beyond the current pandemic, a vaccine volunteer union would ensure that the global poor must also have access to life-saving treatments.
Abie Rohrig is Communications Director for 1Day Sooner