When COVID-19 vaccines became available to elderly Pennsylvanians earlier this year, Carlisle resident Tami Biddle moved quickly to book an appointment for her 93-year-old mother. She soon learned that it wouldn’t be easy.
A handful of vaccine sites near her mother’s home were fully booked well into the spring, Biddle said. She didn’t have much more success when she stationed herself at her computer at 5 a.m., hoping to secure an appointment as new slots came online, or when she broadened her search to include far-flung rural pharmacies.
Biddle couldn’t spend hours each day toggling between pharmacy websites while holding a full-time job. So she was grateful when a good samaritan who lived next door to her mother came to their aid, offering to secure vaccines for all the elderly residents in his neighborhood.
“I don’t know if [he] succeeded through long hours and persistence, or whether he acquired some useful inside intelligence,” Biddle told the Capital-Star last month. “Whatever it was, I was thrilled he could perform a seemingly impossible task.”
Biddle isn’t the only Pennsylvanian who’s relied on volunteer efforts to secure critical healthcare for a loved one this year.
In the absence of a centralized, statewide registry to help people sign up to receive vaccines, grassroots initiatives across the state are helping Pennsylvanians navigate a patchwork registration system that many say is cumbersome and inequitable.
In Chester County, three women created a Facebook page where people in the Philadelphia suburbs can request help finding a booking. Volunteers work phones and computer keyboards on behalf of people who want vaccines, helping them lock in appointments.
Vaccinate PA, a volunteer-run organization founded by students, has built a website that tries to offer up-to-date data on vaccine availability. A bevy of volunteers call pharmacies and other vaccine providers to verify their dose inventory, then plug the data into a directory that helps users find appointments in their area.
The state Department of Health used to track vaccine availability on its map of statewide providers. But the agency stopped earlier this year, saying it was too difficult to ensure reliable data on the quick-shifting vaccine supply.
“It was clear that anything would be better than nothing,” law student Seth Rubinstein said of his decision to launch Vaccinate PA with two University of Pittsburgh students last month. “The idea from the beginning was, let’s not let perfect be the enemy of the good, and just try to reduce the time and stress it takes to find a vaccine.”
Since Pennsylvania received its first shipment of COVID-19 vaccines in mid-December, the state has left it up to each of its 1,700 vaccine providers to register patients for appointments.
Each pharmacy, hospital and health center that stocks vaccines has its own registration system. None of them are connected to a central registry that shows the public where doses are in stock or stores patient data.
Critics say the decentralized approach favors technically savvy folks who have a reliable internet connection and time to spare. It’s been particularly hard on elderly Pennsylvanians, advocates say, since many have difficulty navigating online booking pages.
But Pennsylvania’s system also leaves English language learners and people with disabilities in the dark, since providers don’t consistently translate their materials or offer accommodations for people with impaired vision and hearing.
People without reliable internet access also face a disadvantage for snagging appointments. The Department of Health issued an order last month requiring providers to offer booking services over the phone, but did not say how the state would enforce it.
‘Behind the ball’
This isn’t the first time that the COVID-19 pandemic has laid bare deficiencies in Pennsylvania’s public-facing technology systems.
When pandemic-related shutdowns led employers to shed jobs last spring, millions of Pennsylvanians who found themselves out of work tried to claim unemployment insurance.
The state’s 40-year-old system was inundated with calls and online queries, as thousands of jobless claimants waited weeks for their applications to be processed.
The widespread difficulties spawned a vibrant support community on Reddit. For nearly a year now, Reddit users have gathered in Pennsylvania-specific chatrooms to commiserate and share tips for reaching operators. One user wrote a programming script that claimants could use to jump the switchboard line and get on the phone with a service representative.
Gov. Tom Wolf last month called the unemployment technology a “debacle” and said it has continually improved in the last year. His administration has also said that Pennsylvania was never prepared for more than a million workers to flood the unemployment lines at once.
But unlike the sudden, exogenous shock that the pandemic dealt to the labor market, states have known for months that vaccines were coming down the pipe. Some officials say the state was seemingly unprepared for the vaccine rollout.
“It’s a little disappointing to see how behind the ball we are with this vaccine when we were aware of it a year ago,” Rep. Ryan Warner, R-Fayette, told health officials at a House Appropriations Committee hearing last month. “If there’s one top priority for the governor, or for this department, it should have been having an organized vaccine rollout … And it seems like we put [little] effort into how this was going to be rolled out.”
State health officials say vaccine appointments will soon become more plentiful as the national stock of doses grows. Federal regulators approved a third vaccine last week, and the state is readying plans for mass vaccination clinics that could administer thousands of shots a day.
But despite the challenges of the last three months, health officials have said less about how they’ll make it easier for Pennsylvanians to sign up for those vaccines when they become available.
Lawmakers have taken the stance that it’s incumbent on the state to provide a better customer service experience to its citizens.
“It’s problematic that it’s being left to people in the community to navigate this because it’s been made so difficult by [entities] that have the ability to make it better,” state Sen. Maria Collett, D-Montgomery, told the Capital-Star last month.
Collett is one of the lawmakers in the state House and Senate who is drafting legislation that would require the state to create a centralized vaccine registry. Their proposal calls for a system that would store patient data and notify eligible vaccine seekers when there’s an available appointment near them.
State health officials say they’re open to the idea. But they’ve suggested that a registry could be harder to build than the public expects.
Acting Secretary of Health Alison Beam told a House panel last week that officials would need to see proof that a system could be successful, and that it could come online quickly.
In the meantime, volunteers say they’re happy to step into the void. Rubinstein hopes to keep Vaccinate PA running until there’s no longer a need for it. That may happen when the state steps in with a better alternative, or when the pandemic finally ends – whichever comes first.
“The only reason we exist is because there is a very clear problem in the commonwealth and everyone wants it to be solved,” Rubinstein said. “That’s the only reason we exist. We would vastly prefer it if that problem is solved and we become redundant.”