by Kimia Heydari
NEW YORK CITY, NEW YORK – The U.S. government is acutely aware that developing a vaccine is just as important as addressing vaccine hesitancy: the reluctance or resistance to taking a vaccine product, despite its viability. According to a Washington Post report in mid-July 2020, the President of the American Board of Internal Medicine and other healthcare leaders wrote a letter to the head of the Trump administration’s coronavirus task force, urging healthcare officials to address the rift between the scientific community and the public, and to “take the trust gap seriously as a problem to be addressed, every bit as substantive as having enough syringes and needles with which to deliver a vaccine.”
While the World Health Organization flagged vaccine hesitancy as one of the top ten public health threats in 2019, this trend has been a part of our public sphere as far back as the Industrial Revolution with the smallpox outbreak. Besides its historical prevalence, vaccine hesitancy is psychologically predictable: the human response to inserting a needle containing foreign particles into one’s skin is rarely a pleasant activity to immediately and enthusiastically comply with.
Current monolithic arguments of anti-vaxxers are loud; this community defines itself based on their vehement rejection of vaccines. The most famous anti vaxxer argument is often traced to the 1997 Wakefield paper, which suggested that growing autism rates in British children were not due to robust diagnosis, but to the measles, mumps, and rubella (MMR) vaccine. These anti-vaxxer arguments are separate from but accompanied by smaller, less noticeable moments of vaccine hesitancy that, if unaddressed, can dangerously complicate issues of immunization at the time of vaccine delivery for the coronavirus. Despite the severity of the coronavirus outbreak (with a current death toll of 200 thousand in the U.S), only 50% of Americans express willingness to receive a coronavirus vaccine if one becomes available, which may be as early as October 2020.
Hesitancy is rarely explored in university settings, despite being known for incessant inquiry and open mindedness. The students and professors I interviewed are based in Columbia University, an institution that witnessed New York City ravaged by the coronavirus since late February. This city currently sits at the cusp of a “twindemic,” awaiting waves of both the flu and the coronavirus. Hesitancy among students from my age category (18-22) diverges significantly from portrayals on mainstream news outlets, which depict reckless college students plagued by a mindset of indestructibility in the face of disease. Frequent coverage of college students’ parties in late August and during spring break attest to this trend in reporting. However, my interviews feature the views of students who are far more careful about the pandemic and its preventive measures.
Across conversations I shared with my peers, the role of and competition between pharmaceuticals arises ubiquitously in both students’ conversations with their peers and with their families. As pharmaceutical competition allows for consumer choice, in many cases it frames healthcare as an option rather than a necessity. A disease that we could look to for the implications of pharmaceutical competition, which promotes consumer choice, is Pre-Exposure Prophylaxis (PreP) in HIV/AIDS prevention. This is a daily oral pill that makes one immune to contracting HIV.
According to Noémie Elhadad, professor of biomedical informatics at Columbia University, pharmaceutical variety and subsequent competition of PreP brands have recently been suggested to endanger public compliance with PreP: “This is out of our span of our control, but when different pharmaceuticals were pitted against each other, people started switching brands of PreP or […] stopping their uptake altogether.” Overwhelmed with brand choice, consumers soon withdrew their initial prevention plans. The power of brand choice shrunk the prevalence of PreP uptake in society; this theme recurs in neoliberal contexts of healthcare. According to Heidi Larson, professor at the London School of Hygiene and Tropical Medicine and founder of the Vaccine Confidence Project, in privileged neoliberal contexts people see healthcare as a “service rather than a right, and consider all treatments a consumer choice.”
Besides the looming specter of consumer choice in our healthcare system, political and governmental discourse draws public suspicion towards pharmaceuticals. For example, Trump’s Operation Warp Speed loosened liabilities that pharmaceutical companies would withstand in the delivery of vaccine products. With cautious optimism, student Elin Hu comments, “companies that are creating vaccines are highly publicized. And their reputations are on the line.” Indeed, Hu suggests that companies would take a different approach from their irrevocable and irreconcilable actions regarding the opioid epidemic in the late 1990s. And just recently, the New York Times released a statement from pharmaceutical companies that expressed their adamancy against “political arm twisting” from Trump to become complicit in releasing a premature vaccine.
Unsurprisingly, students with pre-health interests or family members within the healthcare industry have strong faith in scientific inquiry and institutions. Like Elin Hu, rising Junior David Wang admitted that his education on the pre-med track and his personal interests have afforded him both space and privilege to inform himself–to some degree–about the phases of the vaccine trials. He stated, “There’s a reason that all those phases are there. But I don’t fully appreciate the logic that is there. I don’t know if I will know this in the near future, or if it is necessary for the public to know this to great depths.” Citizens are not expected to know the technicalities of a vaccine trial, but are expected to trust the systems that support it. Though perhaps not well communicated to the public, every adaptation to the scientific method is heavily researched and debated by ethicists and scientists. Unlike the laboratory, social systems like potential vaccine delivery and current preventative measures like mask-compliance do not always operate rationally, and rather rely on emotions. This is not to say that rationality and emotion are mutually exclusive, but that feelings–from fear to security–do govern the way we sort through evidence and information.
For example, breach of trust between the public and the scientific community is an element that fuels science denialism. With regard to broader preventative measures against the coronavirus (i.e., masking and social distancing), David Wang expressed worry about the current, non-vaccine related response, stating that “even if a vaccine came out, it would not necessarily fix the fundamental problems for science deniers.” Not all students locate the roots of social resistance towards mask-wearing in a deep desire for liberty. The problem of anti-masking behaviors is less rooted in a breach of rights or freedom, but more so due to inconsistent communication–missed connections between science and society. This is aggravated by the unsophisticated arguments mounted against anti-masking (e.g. “you are stupid or selfish not to wear a mask”). Compulsion does not convince, but cohesion of science communication could.
In early-March, public health officials did not make unified statements about mask wearing. As more information became available about the spread of the coronavirus, public health officials revised past guidelines. Revising public health guidelines on the national level fragments downstream efforts made on the state level: throughout the spring and summer separate states went to different lengths to encourage business owners to enforce face masks. This instance of scientific miscommunication and extensive revision loses many individuals’ reciprocity to healthcare leaders’ recommendations, now visible as flagrant anti-masking.
The government’s as well as stakeholders’ mixed messaging is not in our past. Communication about vaccine development and delivery are even more delicate topics: the public could be more informed if pharmaceuticals and scientists would transparently publish their protocols and findings (e.g., statistical assumptions and data analysis plans) for the public to access. Yet, in an NYT article on September 13th, Katie Thomas explains that the general public and scientists especially are disquieted by pharmaceuticals’ resistance to share their findings and protocols. Motivated by corporate competition, these companies remain greedy about their information towards one another, but their silence fuels anxieties about vaccines.
Stakeholders’ transparency and unified messaging from the government are necessary steps in addressing misconceptions about masks as well as hesitancy about vaccines. Our responsibility as students is mostly limited to conversations within and without our communities.
Still, a more comprehensive and cohesive line of science communication won’t decimate public hesitation about preventative measures. Emotions are intrinsically tied to decisions about interventions in our health. When I asked my fellow students about ways that they would imagine having a conversation with those who resist complying with masks, most pointed to nonconfrontation and gentle reminders. Further, email threads from Columbia University’s administration include an article that provides frameworks as well as phrases for carrying out a respectful and at the same time cautionary conversation with individuals who do not abide by proper mask wearing.
Notably, rising sophomore Chase Cutarelli explained that people may not be fully open to ideas of altruism, but may be more open to wearing masks if framed as a way to enter communities as a way of belonging: “People see it as a way to protect the community, but what if we framed it as a way to be a part of the community?” Not everyone wants to think dutifully about their role in society. Cutarelli’s suggestion could inform our future conversations with those who resist mask wearing.
For the past 8 months, holding conversations online are preferred to those in person. Yet, connection with others online comes with its own set of challenges. In the age of the internet – of connectivity and amassed information – warp speed can take on many meanings. Beyond the struggle to keep oneself educated, engineering student Kenya Plenty raised a concern about truth in the internet age, stating “While I find myself informed by the internet, I’m not really informed about much. Someone’s spin about an event will pull you in a different direction of belief.”
While the internet provides us with information, emotionally based faith helps us sift, categorize, and argue from the points we have absorbed. Two years ago, in a commentary in Nature magazine, anthropologist Heidi Larson stated “I predict that the next major outbreak — whether of a highly fatal strain of influenza or something else — will not be due to a lack of preventive technologies. Instead, emotional contagion, digitally enabled, could erode trust in vaccines so much as to render them moot. The deluge of conflicting information, misinformation and manipulated information on social media should be recognized as a global public-health threat.” In light of this trend, we understand ways that social media amplifies rumors and alternatives to statements issued by scientists and public health leaders alike.
Student Eleanor Hansen echoes Larson’s statements, arguing that emotionally based faith systems reign our decision-making when it comes to siding or fault-finding with the healthcare industry, one that requires immense scientific expertise. She also noted a faulty rumor “flying around online about a study that ‘only 6% of COVID deaths are actually from COVID’ – misinterpreted from the fact that most people dying have an underlying condition.”
There are large advocacy programs intent on stemming the emotional contagion of misinformation. Two examples are the public health nonprofit Stronger and the Vaccine Confidence Project, led by Professor Larson. Since vaccine hesitancy is an issue of lapse of trust, no amount of perfect information can change this story. In an interview with CNN, Larson placed the responsibility on universities and other educational institutions to restore this loss of trust in authorities conducting and communicating health-related research.
On August 20th, Columbia University’s Institute for Social and Economic Research and Policy (ISERP) released a seed grant for investigators who would undertake programs related to best practices for countering vaccine hesitancy and scientific misinformation. Additionally, the Group for experimental methods in Humanities Research, a cohort of computer scientists, physicians, and students led by professor of English Dennis Tenen and physician Dr. Rishi Goyal, have joined forces to use computational literary analysis (research methods rooted in computer science) to collate a database about anti-vaccine rhetoric in online communities. Then, from analyzing these datasets, the team hopes to make suggestions about ways to present vaccines to the public that would encourage compliance.
Delineating arguments revolving around vaccine hesitancy are socially preventative tools for when a coronavirus vaccine is delivered. Like Professor Larson’s Vaccine Confidence project and the larger trend of science reporting, this project at Columbia is rooted in a longer history of vaccine hesitancy and was sparked by the plummeting vaccination rates against the measles virus in New York City. As a historized phenomenon, vaccine hesitancy can be rooted as much in language as it is in action, or inaction.
The name of the vaccine hesitancy project at Columbia, “Vaccines in the Medical Imagination,” deftly points to the volatility and, equally, ever-present potential of our imaginative faculties as human beings immersed in the age of the internet. Beyond her work in biomedical informatics for Columbia’s Data Science Institute, Professor Elhadad is part of the advisory committee of this Vaccine hesitancy project: her research uses computer science methods and machine learning to extrapolate trends from online discussion boards and places of organic human interaction. Professor Elhadad explains that anti-vaccine as well as hesitancy increase when there is very little known about an associated disease. In groups that discussed autism, a lesser known and understood disease, anti-vaccination and anti-medicine tendencies were loud and persistent. Yet, in exploring the online forums of users discussing diseases with more robust scientific communication like breast cancer, there is evidence that individuals within discussion groups on Facebook are quick to correct factual errors and point out potential misinformation, within a few minutes. Though this research team has not yet explored discussion groups concerning the coronavirus or its potential vaccine, Professor Elhadad predicts that online discussion forums about the coronavirus would appreciate those related to autism: though the virus is a part of the SARS family, little is known, and can be known, about concomitant and long-term complications from the disease.
Life in the age of the internet is one of smoke and mirrors. Yet we would be under-appreciative of our connectivity if we discounted the informative potential of the internet. Professor Elhadad makes an optimistic observation: many spaces of discourse operate within the internet space, and that to some degree are self correcting. The online places of conversation emphasizes the centrality of our relationships with one another. With an eye towards mainstream media, student Kenya Plenty admitted that “we need someone like Bill Nye the science guy, but for medicine. We need a figure who is relatable.” One of the goals of the U.S Department of Health is to pair celebrities and scientists in order to encourage vaccine confidence.
Having conducted personal research and scholarship on these matters, Plenty noted “like other historically oppressed groups, the Black community would look much more towards–and be more influenced by–people of their own historical and cultural backgrounds: that despite the system being built against them as a collective, there are elements within the system that representatives of communities of color can encourage trust within.” Plenty’s statement opens further space for inquiry: how do Black people who have been tested within coronavirus vaccines trials feel about a government created vaccine?
However, as Plenty notes, the government (and by the extension healthcare system) was and is propelled forward by exploitation of Black communities in the U.S.. The Tuskegee trials are only the tip of the iceberg for this historical exploitation and rejection from the medical establishment. While students like Plenty and scholars like Harriet Washington (author of Medical Apartheid) recognize that these exploitative actions are highly unlikely to happen again or to this horrific extent, they still acknowledge ways that relics of pain and mistrust can once more be weaponized and irreparably damage the trust patients have for medical professionals. Plenty recognizes these relics of pain and exploitation a part of a “larger colloquial history that many minorities rely on.” This shared history is passed down via stories or anecdotes of experiences within medicine. And these truths lay the groundwork for the trend of trusting neighbors and family more than physicians.
As Professor Elhadad notes, places of dialogue and opportunities for re-integrating trust in science exist within the internet. However, beyond cyberspace, medical appointments are fruitful places for dialogue and rethinking relationships with science. The cornerstone of Columbia’s vaccine hesitancy project is that it welcomes people from different academic and professional backgrounds: the co-director of this project, Dr. Rishi Goyal, is an Assistant Professor of Emergency Medicine at the Columbia Medical Center. Additionally, my interviews with Columbia students drew a number of premed students to zoom calls. For Elin Hu, medical education is one that has been historically unrelatable and bent on cut-throat competition. Yet, despite acknowledging the stress culture of her field of study, she states, “I have a lot of hope for our generation of doctors. We’re disenchanted with the system and we will bring along change.” As Heidi Larson notes, “we don’t have a misinformation problem, but a relationship problem.” The onus is then on us, as citizens (and students) to envision more gentle, understanding conversations that are rooted as much as in emotional well-being of our interlocutors as our vision to be better believers in the scientific method and community.