‘People in My Group Are So White’: Facebook Vaccine Hunter Groups Underscore Inequity of Rollout
‘Vaccine hunters are the result of short supply, disorganization, inadequate sign-up systems, dire circumstances, and crowded hospitals’
In a Facebook group called Minneapolis Vaccine Hunters, a member recently shared a flyer announcing that a local shelter for people experiencing homelessness would be hosting Covid-19 vaccinations on February 11 — no appointment necessary. “Please be mindful that this clinic is intended for unsheltered people in Hennepin County,” noted the flyer, which was conspicuously addressed to individuals “living on the street.”
Later, in a separate post, another Facebook member said they’d managed to get vaccinated at the shelter. They were not homeless, as the flyer intended, but arrived late in the day and received a leftover dose from vaccination staff who said it would have otherwise been discarded. “Was suggested on this site to go at the end… and see if there would be any leftover or unused doses,” the person wrote. “I did that and there was.”
Thousands of Americans are now part of the “vaccine hunter” phenomenon, an online movement of people trading intel about where, when, and how to get vaccinated. Some are motivated by what they feel is a lethargic vaccine rollout effort. Others are driven by reports that hundreds, if not thousands of untouched doses have been thrown away since vaccination began last December. These groups have joined an effort to bring vaccines to those facing innumerable accessibility hurdles such as unequal access to technology, language barriers, and a lack of transportation, which have caused lower vaccination rates in some Black and Latino communities already harmed disproportionately by the coronavirus.
OneZero spoke to the founders of four vaccine hunter Facebook groups that, in the absence of a vaccination campaign that treats everybody’s needs equally, have become ad hoc health care support systems. The movement, while ultimately reflecting a fractured health care system, has also raised ethical quandaries about vaccine supply and demand, and who should be prioritized by the rollout. These questions are now forcing vaccine hunter communities to consider who their efforts might be leaving out, and how to ensure they’re as equitable as possible.
“In an ideal situation we wouldn’t need vaccine hunters. But overall, they’re just helping people navigate a difficult situation.”
Though more than 63 million doses have been administered in the U.S. since December, accounting for nearly 13.1% of the nation’s population, vaccine distribution has fallen unevenly across communities. As a result, vaccine hunting has found a home on Facebook, where dozens of groups, from California’s Bay Area to the Eastern Seaboard, are crowdsourcing vaccination opportunities: sifting through government health agency announcements, researching clinics, and contacting mass vaccination sites. There are now spreadsheets that catalog this information and attempt to unravel what was called a “patchwork of chaos” by a CNN report this month.
“Vaccine hunters are the result of short supply, disorganization, inadequate sign-up systems, dire circumstances, and crowded hospitals,” Keisha Ray, PhD, an assistant professor at the McGovern Medical School at UTHealth studying racial disparities in health care, told OneZero. She noted that vaccination efforts haven’t reached enough people most at-risk of dying from the virus. “In an ideal situation, we wouldn’t need vaccine hunters. But overall, they’re just helping people navigate a difficult situation. They’re community leaders taking care of their community, and oftentimes the most vulnerable members of their community.”
Maura Caldwell, founder of Minneapolis Vaccine Hunters, told OneZero she is looking for ways to help marginalized people get vaccinated, whether through the Facebook group or in physical communities.
“I keep realizing there are holes in [the group’s] equity,” Caldwell said. “People in my group are so white, and it’s not reaching the communities that are hardest hit.”
As witnessed with Covid-19 testing, health care inequality can be expressed through expensive private services or asymmetrical resources. Recently, “vaccine tourism” entered the pandemic lexicon when tens of thousands of Americans began crossing state lines to secure earlier vaccine appointments. Last month, a wealthy Canadian couple flew to a rural Yukon community to get vaccinated at a clinic meant for Indigenous elders. In cities like New York, vaccine disparities can be mapped onto median household incomes.
Caldwell is aware that vaccine hunting has been criticized for potentially enabling “line jumping” or vaccine tourism. She noted, however, that most people in her group share information about vaccination events requiring registration. Caldwell says that the member who was vaccinated at a shelter for people experiencing homelessness did not pretend to be homeless.
“I don’t understand the criticism of ‘line jumping’ if the people receiving the vaccines are eligible based on vaccine distribution guidelines,” Ray said. “Vaccine hunters are a symptom of a broken system.”
Caldwell created the Minneapolis group after reading CNN’s report on the NOLA Vaccine Hunters in Louisiana, one of the first vaccine hunter communities, but was also moved by the vaccination of her parents. “I had a friend call and tell me to get my parents to a local hospital stat, and they got vaccinated and I wanted to pay it forward,” she said.
(The NOLA Vaccine Hunters group now has a website where people can search a directory of local vaccine hunter pages and browse tips and success stories from across the wider community.)
Minneapolis Vaccine Hunters has more than 8,000 members and is growing rapidly. In its early days, Caldwell populated the group with information she sourced from Nextdoor, where neighbors shared tips about vaccination locations. Soon, she onboarded a nurse friend to elucidate the sometimes complicated task of registering for vaccinations online. And while her original plan was to help people find extra vaccine doses — a rare but not uncommon outcome wherein clinics discover extra doses in their vials and are able to vaccinate a few lucky individuals in the right place at the right time — Caldwell has found that many members, especially older ones, have basic questions about the vaccine process.
“Most 81-year-olds don’t wanna drive down to the convention center that’s six hours away [to wait for an extra dose],” she said. A lot of the time, members are “old women posting ‘What does it mean to refresh?’”
“The tech-savvy volunteers can be contacted via private message to help out.”
The digital divide is a massive driver of inequality, from online learning to vaccination registration. In 2018, approximately 16% of U.S. adults were digitally illiterate, and those numbers skew disproportionately toward Black and Hispanic, and people who are foreign-born. Furthermore, only half of people over the age of 75 use the internet. While older Americans were among the first to become eligible for the vaccine, applications are primarily conducted online, making it harder for those without internet access or know-how to obtain appointments.
In some counties, Ray said that as many as 70% of Black residents do not have internet access. “Internet is, unfortunately, a privilege that many people don’t have, as well as a social determinant of health,” Ray explained.
Elliott Hazard, founder of the Maryland Vaccine Hunters group of more than 16,000 members, told OneZero that in response to this need, a team of volunteers has been assisting older people with application forms. After launching the group this month, Hazard created the “Helping Seniors” topic, “which connects young, tech-savvy people with senior citizens who need appointments,” Hazard said. “The tech-savvy volunteers can be contacted via private message to help out.”
In the Chicago Vaccine Hunters group, a team of 50 or so volunteers is assisting older members struggling with online applications, the community’s founder, Roger Naglewski, told OneZero. These volunteers, affectionately dubbed “vaccination angels,” have taken a tactical approach to snagging appointments for Chicago’s older population. Knowing that pharmacies like Walgreens add new vaccination slots early in the morning, “these people are setting alarms to wake up at 3 a.m. to be ready [and] grabbing them for elderly people,” Naglewski said.
Still, since vaccine hunter groups are an online phenomenon, they offer an imperfect solution to the digital divide.
Right now, the primary beneficiaries of all these groups are, understandably, those 65 and older who, while prioritized by the rollout, are still finding it difficult to get vaccinated. But as additional groups are phased into vaccine eligibility, the pool of people needing help will likely widen.
On March 15, Californians ages 16 to 64 who are disabled or have severe underlying conditions will be able to get vaccinated. This is expected to add between 4 million and 6 million people to the eligible population, and groups like the Bay Area vaccine hunters could see a jump in its membership.
“There are a lot of group members who are high risk so once that starts rolling out, it will definitely be a huge help to those,” the Bay Area group’s creator, Pooja Anandani, told OneZero. “I also think more vaccination centers would help too because the appointments at the existing centers get booked in minutes so not everyone gets a chance to book one.”
Vaccine hunter groups, even those targeting marginalized groups like Black and Latino communities, are still reliant on a shoddy health care system to deliver the medicine. Maryland’s Vaccine Hunters — Las Caza Vacunas, are lobbying their government to proactively do more to vaccinate these vulnerable populations. One solution proposed by Ray is the deployment of on-site mobile vaccination units. “First come, first served is not usually an ethically defensible allocation approach because it tends to work to the advantage of people with greater health and resources,” Ray and co-authors wrote in a paper outlining an ethical framework for coronavirus care, which was published last month by bioethics research institute The Hastings Center.
Social platforms have also taken an outside role in connecting people to health care during the pandemic, whether by providing science-based information about vaccines or support groups for Covid-19 survivors. Now, the hope is that they lessen, not worsen existing health care divides.
“We have heard about vaccine hunters and some of us have even had people help family and friends in other states find vaccine appointments, which really does make these folks feel like vaccine angels,” a spokesperson for the Public Health Justice Collective, a Bay Area group working at the intersection of health and social justice, told OneZero.
“Right now, we have a piecemeal system where we are dependent on vaccine hunters to reach people with limited access to the internet or other barriers,” they added. “The work these vaccine hunters are doing is so critical, but it won’t end the inequities in Covid or beyond — we need systemic change for that.”