Trish Whitehouse joined the vaccine hunters Facebook group out of desperation, but that doesn’t mean she started out as a believer.
Whitehouse had already tried to get a COVID-19 vaccine for her 20-year-old son, Bobby Zabarsky, whose serious heart defect puts him at high risk of severe illness or death from the virus. Although Whitehouse was initially able to sign up her son for a vaccination appointment, he was turned away at the site because he wasn’t eligible under Connecticut’s rules.
“I wasn’t going to do anything that wasn’t surefire,” Whitehouse said. “I’d rather wait another six months than go through that again.”
The New York / Connecticut Vaccine Hunters and Angels Facebook group isn’t exactly surefire. But within days of joining, Whitehouse found an excess dose available for her son. He received his first shot last week.
“I’m just so grateful to that group because we’d still be sitting here depressed and feeling like there was nothing out there to help us,” Whitehouse said. “That group was definitely a lifesaver.”
Thousands of people have turned to the Facebook group to find the fastest way to get a coronavirus vaccine in their arm — whether or not they’re actually eligible for vaccination yet.
Group members hunt for excess doses of COVID-19 vaccines, shots that are left over as a result of poor planning or missed appointments. When they learn of a pharmacy or a clinic with excess doses, they share the information in the group and use their experiences to teach other members how to find excess doses of their own.
The chaos and crowd-sourcing of the quest for vaccine doses resembles, in some ways, the months-ago hunt for out-of-stock toilet paper and baking supplies. But the search for inoculation brings up a host of new dilemmas, because the stakes are higher. The prize at the end of this scavenger hunt isn’t a 12-pack of Charmin — it’s protection against a deadly disease.
What does it mean when some people feel their best shot at either understanding the system, or working its loopholes, comes from a Facebook group?
The vaccine hunters
The New York / Connecticut Vaccine Hunters and Angels Facebook group is not one-of-a-kind.
Joel Leyden, a 66-year-old Manchester resident, said he founded the group after seeing a site called vaccinehunter.org, which crowdsources information in an attempt to pair eager patients with excess vaccine doses across the country.
As Leyden clicked through the site, he noticed that there wasn’t a local group for the Connecticut and New York areas. So he started one.
“People will come into the group with one mission and that is: ‘We’re trying to locate the vaccine,'” Leyden said.
While vaccine production and rollout has sped up significantly in recent days and weeks, the reality for many people in Connecticut and across the country is that they won’t be eligible for the COVID-19 vaccine for several more weeks.
For some, that desperation hit a fever pitch after Gov. Ned Lamont in late February abruptly changed the vaccination eligibility order.
Under Connecticut’s original vaccination plan, frontline essential workers such as grocery store workers and people with underlying conditions such as Zabarsky’s were slated to be next in line for vaccination. Lamont’s new plan, which goes against guidance from the U.S. Centers for Disease Control and Prevention, is based solely on age, with an exception for school employees, who have been prioritized.
Currently, vaccinations are officially open to all Connecticut residents 55 and older, as well as all educators, health care workers, first responders and nursing home residents.
But when Leyden founded the Facebook group about a month ago, the only Connecticut residents eligible for vaccination were frontline health care workers, first responders, nursing home residents and those age 75 and above. Leyden didn’t fit any of those categories, but he wanted to be vaccinated.
“I’m under 75, but I have some preexisting conditions,” Leyden said. “And I want to see my kids.”
Shortly after making the Facebook group, Leyden called ahead to and then waited outside of a pharmacy that was holding a vaccination clinic. And at the end of the day, there were a few doses that hadn’t been used up. Leyden got one of the shots, and he has the vaccination card to prove it.
The Facebook group, which now has more than 8,000 members, is peppered with similar stories.
“Got my first vaccine because of this site,” posted Barbara Gaines in mid-February, one day after she received an excess dose. “Don’t give up — it will happen!”
The ethics of excess
Leyden firmly believes that the group’s search for excess doses doesn’t cross any boundaries.
Under Connecticut’s policy, vaccine providers are instructed to give excess doses to anyone who’s in the area — including people who weren’t actually scheduled to receive a vaccine — rather than throw out any doses.
“No one is jumping in line,” Leyden said. “We’re just providing a service that is more effective right now than many federal and state government services are.”
The Lamont administration generally agrees, according to spokesperson Max Reiss, so long as residents understand that the vast majority of people are being vaccinated through official channels. Reiss said he knew of only seven doses that have actually been wasted in Connecticut — six from a dropped vial and one from a broken syringe.
“We don’t have an issue with individuals trying to find those excess doses, especially because … they’re not actively trying to jump the line. They’re not actively trying to get ahead of the prioritization,” Reiss said. But “the first front door for everyone should be making an appointment.”
However, because the stakes are so high, taking excess doses has left some with qualms.
Alyson Giola, a 41-year-old Plainville resident, said she felt a bit conflicted after receiving an excess dose, particularly because she doesn’t have any underlying conditions and she’s not an essential worker.
“I will admit that I felt a little guilty taking a vaccine. I’m a stay-at-home mom of teenagers so I was able to say, ‘I’m leaving for an hour’ and just leave,” Giola said.
Giola said she has turned her guilt into an opportunity to give back. As of last week, she’d already helped four people make vaccination appointments.
“I really want people to try to reach out and make sure that everyone that they know that wants a vaccine is able to get one,” she said.
But Monika Lopez-Anuarbe, a Connecticut College economics professor who specializes in health inequities and game theory, noted the search requires some familiarity with technology, as well as free time and reliable transportation to trek across the state on short notice. Not everyone has those resources.
She said giving back, like many of the group members seem to do, could help close those resource gaps — or it might actually aggravate inequities.
“I’m wondering if, in some ways, the inequities are getting larger because it’s the same people helping the same people,” she said.
On the whole, she said the group doesn’t appear to purely selfless — but that doesn’t mean it’s bad, either.
“It’s not exactly altruism,” Lopez-Anuarbe said. But “there seems to be some kind of solidarity, that we’re all in this together. … That made me believe in humanity again.”
Registration frustration
On Monday, the state formally opened vaccinations to everyone 55 and older, as well as all educators.
As more people become eligible for the vaccine, the Facebook group’s discussion has shifted. The discussion no longer revolves solely around excess doses and vaccination loopholes, but also on how people who are already eligible can successfully make appointments.
“Needing to schedule vaccine in the Hartford Ct area. Everything booked. Any ideas or tips?” one group member posted.
“Looking for a vaccine opening for someone 55 and older in Fairfield County if anybody knows of any locations currently,” another said.
I keep going on the [CVS] site over and over again and only get the message that there are no CT appointments,” another said. “What am I missing?”
Leyden said he believes the flood of people looking for registration assistance is the result of complicated, confusing registration systems.
“The federal and state websites, I don’t want to criticize them but they’re not friendly,” he said. “You have to go through a myriad of different pages and/or websites in order to hopefully find and therefore make an appointment.”
The quantity of posts from eligible residents seeking help with appointments implies a problem with Connecticut’s registration mechanisms. Reiss, the governor’s spokesperson, said the state is aware of the clunkiness of the main registration system, known as VAMS.
“We’ve been saying all along that VAMS is not an ideal system. We know it’s been difficult for people. We’ve tried to make it better,” Reiss said. “The good thing is that VAMS is not the only way to get a vaccine. … But at the same time, we recognize that can be confusing.”
The Courant reported that those problems have been aggravated by Monday’s eligibility expansion, which opened up appointments to about 600,000 additional residents.
“The pent-up demand is enormous,” said Dr. Jim Cardon, Hartford HealthCare’s chief clinical operations officer, last week. “Appointments will be tough to find for a bit.”
Lopez-Anuarbe said the amount of activity in the vaccine hunters Facebook group is an indication that people are both frustrated and desperate.
But she noted that, clearly, some people are making appointments. More than 21% of the state has received at least one dose of the vaccine, placing Connecticut as one of the top states for vaccines per capita.
“Connecticut is our little engine that could. It keeps on blowing people away in terms of what it is actually able to accomplish,” Lopez-Anuarbe said. But “it doesn’t mean that they’re perfect. … Obviously there are a lot of issues, and that’s why this group exists.”
Emily Brindley can be reached at ebrindley@courant.com.
