COVID-19 vaccine is tough to find unless you're an internet genius with broadband
In between school and other commitments, cousins Jaqueline Teague, 16, and Amelie Beck, 14, spend their time trying to register seniors in Kentucky for the COVID-19 vaccine. It all started after something of an ordeal trying to sign up their grandparents -- and then their grandparents' friends needed help, too.
So the Louisville, Kentucky, high schoolers set up an email address and phone number, and then a Facebook page, figuring this issue was more widespread. They're calling it VaxConnect Ky.
"People are calling us and they only have landlines, and they don't have internet or a computer or an email," Beck says. "That's more common than I realized."
As of this writing, Beck and Teague had gotten about 700 people either scheduled or vaccinated and had another 900 emails and 700 phone calls waiting for them. They've recruited their siblings to help, and reached out to the governor and local senators with recommendations for how to improve access.
"It's the most important thing right now to just get the vaccines out as fast as possible," Teague says.
The digital divide is a massive problem for the US, with the pandemic and resulting lockdown a stark reminder that having adequate broadband is no longer a luxury. But the process of signing for a vaccine appointment, which requires navigating labyrinthine registration websites and apps, adds a new wrinkle to a problem that's affecting seniors and many in communities of color in the US where access to the internet is hard to come by. The result: Folks who are most in need of getting the vaccine are having an especially hard time signing up.
About 27% of American adults over the age of 65 don't use the internet, according to the Pew Research Center. Pew also reported that a third of Black adults in the US lack home broadband. ABC News reported that the situation is even worse for seniors of color. Meanwhile the Centers for Disease Control and Prevention said people 65 and older, as well as members of racial and ethnic minority groups, are dying at disproportionate rates from COVID-19.
Difficulties in signing up for the vaccine are just the latest way the digital divide is hitting home in the US. Microsoft estimates that more than 160 million people aren't able to use the internet at broadband speeds. When so much of modern life requires an internet signal to do everything from completing schoolwork to applying for jobs to ordering groceries, especially during the pandemic, the inability to snag a vaccine through online means could affect people's survival.
"These technology tools that are so wonderful and hold so much promise aren't working for the folks who really need it the most," says Kelly Hirko, assistant professor of epidemiology and biostatistics at Michigan State University.
But as the US crossed the marker for a half million deaths from COVID-19 in February, people are struggling to register those who can't register themselves.
The bias of tech tools
Although Teague and Beck have gone the extra mile in lending out their tech skills, similar scenes are playing out across the country as friends, family and strangers try to find appointments for those having trouble doing it for themselves.
After 38-year-old Jennifer Fugel of Olivebridge, New York, registered her father -- who doesn't have an email address -- his friends started calling her for help.
He's "pimping me out to his friends, he's like 'my daughter gave me an appointment!' and they're calling me like, 'How did you do it?' Now I'm checking CVS, Walgreens and Rite Aid on a daily basis, multiple times so I could get his friends appointments, get his girlfriend an appointment and my aunt," Fugel says.
She's a part of a Facebook group where people post tips on vaccine availability, and she's been using her ability to move fast on making appointments to help her father's friends find appointments.
In Pennsylvania, there's a Facebook group that offers a Google Form to connect those who need help with those who can give it.
Several people I talked to compare the situation to trying to get concert tickets, or passes to Comic-Con, which adds an additional layer of challenge: speed.
"Many of my older patients are not that comfortable using the internet," says Muriel Jean-Jacques, associate vice chair for diversity, equity and inclusion in the department of medicine at Northwestern Medicine. "They might have internet, they might have cellphones with wireless access, they may have text, but they're not fast using it, they don't feel comfortable."
What this underscores is the false assumption that using the internet is inherently easy and natural for everyone. When going up against more tech-savvy folks, who are quicker at finding out about vaccine availability and then snagging appointments, some seniors will just be out of luck.
"It's very clear that the race is not fair," Jean-Jacques says.
Reaching communities of color
Seniors aren't the only ones getting left behind in the attempt to get the country vaccinated, due in part to inequities stemming from tech.
Research has shown that communities of color tend to have less access to broadband. The Brookings Institute, for example, found that Black and Hispanic households have lower broadband adoption rates compared with white and Asian households. North Carolina State University showed that about 75% of those in urban areas without broadband were people of color, and too much of a focus on getting broadband to rural areas could be leaving people of color out.
Meanwhile, the Kaiser Family Foundation found that adults in communities of color were less likely than white adults to say they had information about where and when to get vaccinated.
"There's a dearth of alternative forms of information being provided to people," says AJ Adkins-Jackson, research fellow at Massachusetts General Hospital and Harvard Medical School.
Even when a local government makes an effort to get vaccines to communities of color, it doesn't always work out. The Los Angeles Times reported that in California special access codes created specifically for hard-hit Black and Hispanic communities to sign up for vaccines, and distributed through community organizations, ended up in "more affluent professional and social networks."
The New York Times reported that places like medical clinics in communities of color have seen significant upticks in white people from outside the neighborhood scooping up appointments online. The report noted that many in underserved neighborhoods are stymied by websites that are difficult to navigate, transportation issues and phone lines that might require hours on hold -- something that may be impossible to contend with in the middle of a workday.
"Because everybody feels the pain [of the pandemic], everybody feels that they're due to be first in line for the vaccine, but there has to be a way to balance the receipt of something that is so essential like a vaccine for protection, with the highest need for the vaccination," Jean-Jacques says.
When tech savvy isn't enough
In the 1960s, Mary C. Childs was an electrical troubleshooter working on computers, back when they were the size of whole rooms. She even worked on the Apollo 11 landing gear. Now 83, she was one of many trying to sign up for a vaccine without much luck in January.
Through the combined efforts of Childs, her son Pierre Cadieux, who's worked in computing since the '90s, plus Cadieux's wife, it took about two weeks of wading through glitchy websites, filling out endless fields and battling confusing user interfaces before Cadieux got a tip from a friend via Slack that some appointment availabilities had opened up in the area.
"Technical expertise was not necessarily a great savior, in this case, but without it though, I would never have been able to start," Cadieux says.
Childs says she has friends who are also seniors who are waiting to be told they can get the vaccine. They don't know how to seek the information out online.
"They're not into computers," she says. There are "seniors who [won't] further their technical knowledge. Some of them refuse to get a cellphone. Those are the ones who are hard to get to."
Thụy Nguyễn, 71, has a master's degree in computer engineering. Registering himself and his 77-year-old brother and his 82-year-old sister, who don't much use computers and primarily speak Vietnamese, was an exercise in frustration. The Orange, California, resident encountered site crashes, differences in information between the app and the website, and a confusing user interface.
Without him, he says "my sister and my brother would not be able" to register.
Alison Lombardi, 41, of Corona, California, is a small-business owner who says she's comfortable working with tech. She ended up trying to help her parents, who were trying to help their parents get appointments and had to sort through a lot of confusion to finally get her family slots at the Dodger Stadium vaccination site.
"I think [my grandparents] might have ended up ... giving up," she says, thinking about what would have happened without her tech support.
Cadieux sees a bias in the assumption that relying mostly on a website or app is the best way to get people to sign up.
"It's not necessarily easy for the target audience," Cadieux says. "If you're trying to reach people who aren't technically aware, or be very broad-based and reach a lot of demographics, you have to think of nontechnical solutions."
Bridging the gap
The digital chasm between vulnerable people and vaccine signups feels wide, but researchers think it can still be bridged. And not every solution has to involve tech.
Montgomery County, Maryland, will start prioritizing vaccines for ZIP codes hit hardest by COVID-19. President Joe Biden's administration has launched a program to get vaccines to community health centers specifically in underserved communities.
Jean-Jacques suggests reserving a certain number of vaccines to be allocated to the highest risk communities, and making better use of sites within communities like churches and schools -- making those into vaccination sites that don't require preregistration.
Adkins-Jackson and colleague Tamra Burns Loeb, who is an interim adjunct associate professor at the UCLA Semel Institute for Neuroscience and Human Behavior, Department of Psychiatry and Biobehavioral Sciences, talked about billboards and posting information in places like storefront windows. And not just foisting information on people, but creating spaces, particularly for communities of color that may have some reservations based on longstanding racial injustices in medicine.
"To be able to make informed decisions about vaccination requires them having all of the information that they need to make a decision, and it requires the ability to openly express and discuss what's happened to them," Loeb said.
Possibly most important is creating connections to communities and building the kind of infrastructure that could be called on again in the future, were another similar crisis to unfold.
"The solutions exist," Adkins-Jackson says, "They exist but [not] without creating strong relationships and connections to community."