Photo: Sean Waltrous

 

By S. Mitra Kalita, with contributions from Epicenter volunteers Sree Bhagavan, Kris Brewer, Eric Garcia, Abby Gewanter, Devi Gupta, George Hagstrom, Julia Kopelson, Kenisha McFadden, Sarah Kulkarni, John O’Neil, Millie Rose, Hannah Roth, Myrna Suarez, Vivian Tam and Elena Tate

 

In early January, Epicenter-NYC, a newsletter launched for New Yorkers to get through the pandemic, began registering members of our community for vaccines

As of this writing, we have booked more than 2,600 appointments. More than 5,000 people have turned to us for help. Of those, about 1,000 were ineligible, about 1,000 folks found a vaccine via other means, and roughly 400 are being worked on. They just keep coming. 

In a recent discussion with Harlem Gunness, the director of St. John’s University’s public health program, we compared notes. Gunness just completed a study of conditions in Jackson Heights, Corona and Elmhurst during the pandemic. After hearing about Epicenter’s efforts, he encouraged us to summarize our findings for broader dissemination.  

As a media organization, we know this is a nontraditional way to report a story and we never planned to pivot from a weekly newsletter into a full-service vaccine registration company. But three pandemics are colliding right now: 

  • Systemic racism 
  • Loneliness/absence of community
  • Coronavirus

On its own, each would pose a significant obstacle to an efficient vaccine rollout. Together, they are creating a public-health crisis and exposing the limitations of business as usual. We at Epicenter feel uniquely positioned to be a part of the solution, born out of serving hard-hit communities, connecting intersectional audiences we consider our neighbors, and leveraging communications across platforms, media and languages.

These confusing, fragmented systems require some glue. So we share this reporting in hopes it informs vaccine distribution for the days to come, in New York City and beyond, and hastens efforts to get shots in arms to those who need them most. What follows is a category by category summary of the experience of our team and volunteers, with proposed solutions for many of the problems identified.

It’s very hard to get an appointment
Photo: Andrea Pineda-Salgado

Most people come to us in frustration. They or someone they love have heard they qualify but cannot figure out how to get a vaccine. 

Essential workers and elderly people were given priority in eligibility but are precisely the people who cannot spend hours on a computer to book an appointment, so many have been left behind.

They give us their information in a few different ways: 

  • They fill out this online intake form
  • They see a flyer in any number of languages and follow the QR code to be taken to the form. 
  • They call 917-818-2690 and leave their information, which one of us then inputs into the intake form. 
  • They sent an email to our main inbox. We received emails mostly in English but occasionally Spanish and Chinese. 
  • They texted one of us after someone they knew (family member, fellow churchgoer, colleague) secured a vaccine through Epicenter. 
  • Their boss, supervisor or business owner reached out and provided lists of qualifying employees (most common among restaurants). 

Every day, we hear from so many eligible people who haven’t gotten their vaccines because of concerns over access, fear, time or language issues. To be clear, many of them have been eligible for months

It is almost impossible even for those devoting their days to this effort to keep on top of all the twists and turns. Announcing changes and availability on social media (such as this tweet from an Assemblywoman saying people over the age of 85 could now just walk in; something we did not see in news stories or press releases elsewhere) means you have to be constantly plugged in to stay current. Those meant to be at the front of the proverbial line are the very populations that are not on the internet all day long, often unable to check email, let alone be on Twitter. 

Without this technology or the ability to drop everything the instant a tweet goes out, the people most in need are not able to connect with the appointments (and this is assuming there is no further barrier such as language etc). 

If an elderly person walks into a pharmacy to seek an appointment, she should be helped to get one instead of being directed to a website (there’s a reason she went in person). Most of the registrations require somebody’s email address; some sites reject using the same email twice, which makes it hard for a child booking on behalf of both parents. 

The current system is about drawing different categories of people into vaccination centers; more effort needs to go into pushing vaccines out to communities. 

Vaccine hesitancy and the chain effect
Photo: Sean Waltrous

People are looking to us for help getting a vaccine so hesitancy is not going to be well measured here. However, there is a definite chain effect based on one person in a family, on a shift, in a restaurant, in a building getting a vaccine appointment through us–and then we suddenly hear from MANY. This reflects the guidance of Dr. Ala Stanford of the Black Doctors Consortium in Philadelphia. She told the Journal of American Medicine: “it will take trusted leaders to impart the safety, the efficacy, and the importance. It won’t be your president, your surgeon general, your secretary of health because the messages have been so mixed from the beginning. I personally think it’s going to take me, or someone like me, receiving the vaccine live and following me…to see how I’m doing and measuring my antibody response.” 

Epicenter is a part of URL Media, a network of Black and Brown community news outlets, and when the Haitian Times and TBN24 (Bangla livestream) mention us, our intake from those communities increases. We have heard from many companies and community groups and offered training or links to our videos so they can book appointments on their own. 

Eastern Queens, southern Brooklyn and Staten Island

These areas share common concerns. Their residents  live in more sprawling areas, perhaps not walking distance to a pharmacy or train line. There are often no vaccine sites near them and, in the case of Staten Island, booking elderly couples together felt nearly impossible. Our volunteers “gamed” the system, repeatedly hitting refresh and would assign multiple people to ONE client to secure them an appointment on the same day as a spouse. 

We also hear from many homebound seniors in these areas; unlike parts of the city where density might mean both a caring neighbor and a pharmacy nearby, these areas don’t have such built-in support. 

Volunteer Millie Rose mentioned high rates of Covid in Borough Park and Gravesend: “I live in South Brooklyn where we have two NYC-run vaccine sites — Brooklyn Army Terminal and Abraham Lincoln High School (three if you count Coney Island Hospital as part of the NYC H+H system). It’s about eight miles (15-20 mins drive depending on the traffic) between the two sites where there are no other state or city run sites. This leaves residents that are not eligible to be vaccinated at pharmacies with only two-three options and Abraham Lincoln High School only operates four days a week (two out of four days is only for half of the day).”

Getting the day off

Restaurant workers in particular have very tough schedules to match with vaccines. There are multiple concerns here:

  • Two days off for the shot PLUS any recovery time for side effects.
  • A fear of long lines or uncertain wait times at places like Javits or Citi Field; one woman had a 10 a.m. appointment but her shift at a sushi restaurant started at 11 a.m. She made a calculation to not even try Citi Field after hearing about lines. She went after work at 11 p.m. and then decided to try to get her vaccine. Officials let her in because her code was still valid for that day. 
  • Asking managers for time off and documentation is another challenge. 
  • Many work multiple jobs and shifts, so we find, over and over, that a short three-hour window really might be the only time they have to get vaccinated. Matching that up to the limited availability of appointments in a convenient geography is a real challenge. It often seems as if the appointments system was designed with white-collar workers in mind, rather than the delivery workers, nannies and restaurant employees who need vaccines because they can’t work from home.

The best, most efficient booking experiences have come from working directly with restaurant owners/managers themselves. They have control over workers’ schedules and can build the vaccine into that; we are also able to explain the documentation the workers need or that they can provide (letterhead) to best help; one manager of four Indian restaurants has spent the week driving his workers around the city to appointments booked by us. 

From volunteer George Hagstrom: “The City-Run vaccine hubs should offer more first doses early in the week. Essential workers often have Monday/Tuesday as their off day, but city run sites have more weekend availability. Also more morning appointments if possible.”

A suggestion from Eric Garcia, a volunteer: “Hotel, restaurant and delivery workers need to know that they can be flexible with the times of their appointments, because their schedules can vary so suddenly if they’re asked to come in early or work a late shift. At Javits, for example, so long as your *date* is correct, the time you’re there doesn’t bother them — but I don’t think many people know that, and I don’t know if that applies at the NYC H&H or other City-run sites. Lots of cancellations and ‘I couldn’t make it at the last minute’ that could be avoided with better outreach and flexibility.” 

Disabled, elderly and homebound concerns
Photo: Niamh McDonnell

We get questions about stairs, steps, places to sit, parking, distancing and elevators. We tell people we are not equipped to answer. However, we have encouraged our interns and other staffers/volunteers who get the vaccine to chronicle their experience with an eye toward answering these questions (more important than the selfie!) and post them on Facebook, Twitter and Instagram. The populations most concerned are not necessarily on these platforms but we hope word of mouth spreads. 

We have helped many seniors fill out the forms for a J&J vaccine to be administered at home. But the request seems to enter an ether. They are assured a call back but it’s been weeks and no such thing has happened. 

Asians, especially seniors, have fears

We have a team of Chinese speakers. They have been flyering, calling and monitoring both our inboxes and an intake form in Chinese. Volunteer Vivian Tam writes she has “definitely seen a pattern when booking … with the same workers of a restaurant submitting their details, folks we text back and forth with to help them clarify documents they need to bring, sending location photos the morning of for them since we can’t be there in person, considering only booking elders in the daytime and close to home in fear of even putting them in danger while traveling.”

There are also families who want to go together but, say, one person is a taxi driver and qualifies but a nail-salon worker does not. We have heard of cases where New Yorkers in public-facing occupations want to wait until eligibility and availability widen to encompass more of their household. 

Confusion over eligibility
Photo: Sean Waltrous

Since the beginning of this rollout, there have been questions over the exact categories of eligibility. Is a nanny a childcare worker? Logic says yes but the NY State form says they must be a “legally exempt” childcare worker. 

Until the recent guidance on public-facing building workers, doormen and security guards kept asking if they were eligible. Farm workers in upstate New York asked for our help, and were seemingly not eligible — until someone found out that because they sell in greenmarkets, they could get vaccinated under the same category of grocery store workers. 

To compound matters, there are different rules at different sites for who can get vaccinated, and different asks for documentation. One city-run site denied an instructor from a SUNY campus, for example, even though he lives in the city. An independent pharmacy declined to vaccinate two people who had self-attestation forms for comorbidities but no doctor’s notes. There are grocery store workers who work in New Jersey (where they’re not yet eligible) but live in New York City (where they are). 

Booking couples and families together is really hard
It took five volunteers to schedule Bob, Sue and Lolita (a couple in their 90s and their aide) for vaccinations on the same day in early March. Getting groups booked together is very difficult in the take-what-you-can-get registration system.

Because of the nature of the online booking (grab it while you can) and even phone intake, getting TWO appointments together feels near impossible. Yet elderly couples and families often rely on one member to drive or navigate; immigrant families might need one member to translate or fill out forms, etc. 

Our solution has been to anticipate large drops (say, at Elmhurst) and have ready the names of families who have requested to go together. Then up to 10(!) volunteers will try to divide and conquer and get them all in. Now think of a family trying to do this on their own. 

Volunteer Myrna Suarez suggests: “The elderly should be able to bring their caregivers and be given on-site vaccines.”

On March 21, Epicenter was informed of a pop-up clinic in Brooklyn, coordinated by Clinton Hill Fort Greene Mutual Aid, that provided transportation and promoted itself as a safe space for Asians; we were able to fill 30 of the 100 slots with blended families of seniors and comorbidity cases who happily traveled from Queens for the chance to get vaccinated together. 

Second dose concerns
Photo: Sean Waltrous

People are very fearful of the second dose and being laid up in bed or unable to work.

The registration systems for second doses also are inconsistent and confusing. Some sites say to await an email a few days before the appointment; again, these are populations that might easily miss an email. 

We also get asked a lot: What happens if I lose my card/proof of getting vaccinated?  

Our volunteers report that Walgreens and Duane Reade are especially difficult in terms of second doses; “Booking is buggy and rejects you in a weird way, citing unavailability of dose two.  Locations for dose two do not often match dose one, and may be very far away. The rescheduling/relocating of those second doses is nearly impossible so far, and some seniors foolishly cancel hoping to rebook and then have to scramble. Their supply chain has all brands of vaccine set to return at a 28 day interval, which is technically ok but unnecessary and unnerves the seniors who know that Pfizer is 21 days and Moderna is 28 anywhere else. Once you go with them for dose one, you are stuck with them for the most part. I realize the city or state cannot dictate a change here, but someone needs to pressure corporate to make it simpler, and in the meantime branch staff are fielding angry calls and trying for workarounds. They have great locations but this mess is going to hit (especially seniors who perhaps could not go to big centers) in the coming weeks.” (Walgreens did not return an email for comment; CVS did and we plan a follow-up story.)

Also because we are dealing with elderly populations, it is not uncommon for there to be an illness or a death of a loved one that prevents them from making the second-dose appointment. For restaurant workers, it might be a matter of getting scheduled to work — unexpectedly. 

Unemployment is high

Besides the 5,000+ people who have completed our intake form, we also have been deluged with volunteers. More than 250 people have emailed us to help book vaccines. Anecdotally (we are still crunching data as it comes in), both these groups of people have large numbers of unemployed or underemployed, seemingly higher than the city’s January unemployment rate of 12.6%. Both groups — the givers and the seekers of help — acutely understand the role vaccines play in the return of our economy and their jobs. 

Two further takeaways here: There is confusion over whether a bartender who lost his job still qualifies for a vaccine. And there is an army of do-gooders to be tapped for the rebuilding ahead. Many of them tell us joining Epicenter’s efforts to register people have given them a way to fill their days and a sense of purpose right now. It also has been a rare group activity in a year devoid of them. 

Documentation
Photo: Andrea Pineda-Salgado

I can’t take the vaccine. I talk with [name of boss] and she can’t give me any letter as a proof of eligibility. 🙁 I’m sorry that I waste your time, and thanks for your help, I really appreciate it.”

This was an email received from an undocumented woman who works in a cafe/bakery in Queens and is paid in cash. Her predicament has been encountered dozens of times by Epicenter staff and volunteers. We now have a public folder with samples of letters for download, inspired by workers at outlets like GrubHub and Uber having access to such proof of occupation on their phones. 

Beyond proving what they do, we also get questions over proof of address; immigrants might be crashing with a cousin but use a sibling’s address in another state for their license, or they might be paying cash for a basement apartment and have no utility bills in their name. 

There’s also inconsistency of enforcement in documentation. Some sites don’t check anything beyond an ID, while others go through each piece of paper and still ask for more. This risks being a deterrent to those who fear getting vaccinated means their immigration status might be exposed. 

While state and city sites accept self-attestation of comorbidities, pharmacies’ stricter requirements for pill bottles, prescriptions, doctors’ notes, patient charts, etc. also have spooked some. They tell us they do not have a primary care doctor or that the process of getting proof might take a while. 

Happy ending: Undeterred by her employer’s lack of support, the bakery worker used a passport, proof of address and a general letter stating her profession and got her vaccine. 

Transport

The nature of booking appointments whenever, wherever means a game of hopscotch is being played around the city. One restaurant manager told us of a Queens-based worker with an appointment in Brooklyn. He drove around for hours, lost, and couldn’t find it. He finally gave up and returned to his home borough. We booked him for another appointment in Long Island City and the manager personally drove him to make sure he made it. 

 Our volunteers are often asked about transportation. We give the numbers for Access-a-Ride and the Curb program, as part of the city’s pledge to make sure seniors can get to appointments. We do get complaints that wait times can be several hours; one volunteer just started paying for transport for the neediest cases out of his own pocket. Others have asked why this program is only for seniors, and if anyone who needs transport might qualify. 

 Volunteer Elena Tate says: “We need buses/vans for vaccines around the state. People need more convenience and less reasons to say no.” 

Questions over Moderna vs Pfizer vs J&J
Photo: Jade Stepeney

We were not surprised by the euphoric reaction to the J&J vaccine. Two groups in particular covet it: the very elderly (85+) and restaurant workers. 

 Volunteer Millie Rose said: “Most restaurant employees have one day off a week, making it difficult to schedule them for one dose, let alone two. Once the state and city receives a steady supply of Johnson & Johnson vaccine doses it would be extremely helpful to have a site with J&J that prioritizes restaurant employees.”

 Most volunteers agree that the Centers for Disease Control messaging of “get whatever vaccine you can get” is not being internalized by many. People of color have asked about whether Moderna or Pfizer is better for (insert their own ethnic group here). We are clear we are not medical professionals, scientists or even in public health and refer them to their doctors. But the differences among the vaccines — especially as the vaccines being issued in the home countries of some immigrants are different — is a regular topic of inquiry and conversation. 

Zip codes and keeping people out

On a recent pop-up that was only for the residents of Corona, a volunteer from Jackson Heights said: “One zip-code pop-up is like a spit on our face.”

 Similar rhetoric among politicians of “outsiders” taking appointments at Javits, Aqueduct or other state sites within city limits feels loaded. Many of the people seeking help from Epicenter live in New York City but work outside its borders, or the reverse. Others have families with many overlaps between the city and its suburbs (including a fair number of inquiries we get from New Jersey). 

The UX of the sites

Epicenter volunteers, often writing scripts, bots and installing Chrome extensions to make their bookings, have lots of thoughts on the sites and their user experience. 

 Many complained about a recent redesign to the state site: “The state site no longer filters by closest facility. Buffalo often comes up first. Javits and York on page two on list.” 

 “The state redesign was absolute garbage — it undermined what we had been teaching lay people how to refresh and the idea that there are easy appointments. Sending people back to the beginning who may have slow internet is horrible and exacerbates inequity.” 

 Asks another: “Why can’t you filter city sites by what vaccine you want?” 

 Some (rare) praise for the state sites! “The state vaccine locations are the best because they have a broader range of eligibility and qualifications. Make all sites open to people who work and live in NY. It’s less thinking and room for error. Have certain places be Manhattan-only.”

 Then there’s this: “The NYC Website is the best out of every site available in NYS including state, H+H, pharmacies etc. We should model all websites after that one.” 

 We have lots of praise for Affiliated Physicians’ password-locked sites as easy to use, but they book up so quickly and word of their availability is the best-kept secret.  

Pop-ups and walk-in vaccine sites
The registration table at a vaccine site in Harlem.

These have been effective, but New Yorkers say they want more of them, more advance notice, more ability to walk in, more of them on Mondays and Tuesdays and they want them open for several days. Suggested venues: more houses of worship and libraries. 

 Volunteer Vivian Tam suggests: “We need walk-in/pop-up sites that last more than just a day. Word of mouth between trusted community members/friends is often how people decide to get the vaccine so these sites need to be consistent and connected to community centers (senior centers, local non-profit groups) that people are already familiar with.”

She adds: “When eligibility opens up, there needs to be flexibility that elders, restaurant workers, drivers and other essential workers are reserved ‘walk in’ vaccines since they are disadvantaged by online booking.” 

Language access

Our efforts have been able to scale thanks to flyers in more than a dozen languages (we have native speakers in Spanish, Chinese and Bangla; for the rest, we turned to Reddit for translation help) and one-to-one contact between volunteers and neighbors in need of help. Outreach must be personal and include multiple languages; by the time we get to intake, we find getting basic information like names and addresses is easier and possible in English. 

Outreach also needs to extend to how people from the communities of the targeted populations are doing. From volunteer Eric Garcia: “I’ve had a lot of conversations with strangers about the vaccine, and a surprising number of eligible people are still saying ‘I’m going to wait; I don’t want to be the first.’ They need to know that millions and millions have been getting vaccines for months and are doing great — the first wave has been done for a long time now.”

Time is running out

The rise of variants is upon us. We all feel this. We know of a handful of cases where people who asked for our help have contracted Covid in the time it took to find an appointment. This is heartbreaking. We can’t go fast enough. 

 We know what can happen, and every resource the state and city has should be mobilized right now. We repeatedly say that making vaccines ubiquitous and accessible is the single most important thing every company, community and individual can be working on right now. This is not a time for the media or other institutions to be distant or objective; the science is clear and it’s okay to get behind it. And Black and Brown lives are disproportionately at stake. 

A word from the Epicenter

We could not conclude without speaking up for our neighborhood, a dense immigrant mecca where the world meets. Our newsletter serves the entire city but after weeks of working together, the volunteers (from all over) agree that Queens, specifically the Epicenter, is underserved. 

 “Queens slots go incredibly quickly while Staten Island and the Bronx go slower. Queens needs more supply in varied locations. There are multiple sites near Jamaica, but not enough a little bit further west.”

 “The Brooklyn and Queens FEMA sites need double the amount of allocated vaccines. We should really think about opening eligibility to all by zip code in those boroughs.”

 Volunteer Sree Bhagavan: “All residents of this Epicenter (Jackson Heights, Elmhurst and Corona) must be eligible for the vaccine. The pandemic struck this entire community with no discrimination. So why the eligibility criteria to get a vaccine?”

 

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13 Comments

  1. Very informative article about the woes of securing vaccine appointments in such a decentralized system. Thank you.

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