It’s chaos as older people struggle to get a Covid-19 vaccine. Here is what you can do

Nancy Wilkinson knows her way around the internet. Retired from a career in IT support, the 66-year-old was unfazed by the hurdles her Decatur, Georgia, neighbors and friends faced as they struggled to schedule appointments for the Covid-19 vaccine.

Acting on a Sunday 4:30 a.m. email request to register, Wilkinson snagged an appointment last week for her wife, Susan, and herself just after Georgia announced that it was moving to Phase 1B of the phased rollout. That meant the vaccine would now be available to the state’s 1.4 million seniors 65 and over, including Wilkinson. Yet her social media feed was filled with frustrated folks unable to find a shot anywhere.

“More than that, I have so many friends who are trying to make appointments for their elderly parents in other states and the information out there is just completely, totally confusing,” Wilkinson said. “It’s hard to find the freaking information if you don’t live online like I do.”

In Florida, where 4.2 million people over 65 reside, Rebecca Smith recently huddled over three computers trying to schedule a vaccine appointment for her parents, Murray and Toby Simon, who are in their late 70s.

“The county said everybody go online at 2 p.m. on a Monday get a slot for an appointment to get your vaccines and before 2 p.m. even hit, the website crashed and you couldn’t get on,” Smith said. “This happened for two weeks, and it was like paralysis.”

Finally, Smith said, the county decided to implement a lottery system that would release 1,400 shots every Monday to those who had registered.

“My parents got number 25,367. That was their lottery number,” Smith said. “I did some math, and it would take like 71 weeks or something just to vaccinate the 100,000 people over 65 in our county.”

The CDC plan

As hospitalization and deaths from Covid-19 skyrocket, many of the nation’s 50 million seniors over 65 are struggling to navigate a confusing landscape of vaccine distribution plans that can differ from state to state and in some cases, county to county.

Here was the original plan. In December, the US Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices recommended a phased process for states to follow.

Phase 1a was to vaccinate the most at risk — health care workers and elderly in long-term care facilities.

In Phase 1b, vaccines would be given to people ages 75 and older and non-health care frontline/essential workers, according to the committee.

Phase 1c would include people over age 65 and anyone between 16 and 64 years old with high-risk medical conditions, as well as any essential workers not already vaccinated.

Phase 1a has been underway for the last month in all 50 states and Washington, DC, according to an analysis published this week by the Kaiser Family Foundation (KFF). In many cases, hospitals and clinics took on the task of vaccinating workers, while CVS and Walgreens tackled the long-term care facilities.

Immediately, however, some states went their own way. In Florida for example, where the Simons live, Gov. Ron DeSantis included all people over 65 into the 1a group. Other states added police and firefighters, while others included the incarcerated and homeless. Thirty states have tweaked the guidance and added in additional groups, KFF found.

While most states are still in some version of phase 1a, 10 states and Washington, DC have moved into Phase 1b, and Michigan has begun to implement 1c, according to KFF.

Communication to the public on which phase a state is in, how to find a vaccine and where to go to get the shot is left up to the state, typically the state health department, which may then leave it up to the county level to organize and administer.

In Georgia, for example, there are different phone numbers, websites, vaccine distribution centers and appointment links for each county. Yet people can book an appointment across counties, creating a confusing patchwork of detective work for the individual.

Then there is the issue of supply.

“What is challenging for our local health departments is the complete unpredictability of supply at this moment in time,” said Lori Freeman, the CEO of the National Association of County and City Health Officials.

“Even when you have vaccination efforts going on, what we’re seeing across the country is they’re coming and going because this supply is not predictable,” Freeman said. “They’re being canceled at the last minute, and that sort of thing, so the predictability of the vaccine supply is at issue here.”

To add to the confusion, a senior Trump administration official told CNN Friday that some reserve doses of vaccine had already been released into the system starting last year.

That could mean the vaccine could be scarce for some weeks, said Dr. Marcus Plescia, chief medical officer for the Association of State and Territorial Health Officials.

“We are hearing there is not a stockpile of vaccine for second dose but that it was more of a ‘paper exercise,'” Plescia said. “Until there is a more robust supply we need to be clear with the public that opportunity to get the vaccine is limited.”

READ MORE: Despite Trump administration promise, government has no more ‘reserve’ 2nd vaccine doses

Decades in the making

At this point in the pandemic, local health departments are filled with exhausted staff already stretched razor thin since adding Covid-19 testing to their regular duties last March.

Combine that with a decades-long lack of investment in computer and back-end infrastructure, and you have a network with every reason to fail.

“Call systems are crashing, websites are crashing due to the sheer volume and desire to get vaccinated,” Freeman said.

“We see that as both a pro and a con. OK, great! People do want to get this vaccine — we need people to get this vaccine,” Freeman said. “But we’re working against the incompatibility of the systems to talk to each other and the lack of a standard system to be used across the country.”

Mass confusion is causing some vaccine appointments to go unfilled. In New York state, home to 3.1 million seniors over 65, New York City Comptroller Scott Stringer tweeted on a Sunday that 200 vaccine appointments were still open for the following week.

“I am concerned this signals twin failures of outreach and technology by the City,” he wrote.

Shoring up back-end technological infrastructure is “clearly where the federal government can step in … so we don’t see this piecemeal approach where every state is duplicating effort,” said Jason Schwartz, an assistant professor at the department of health policy and management at the Yale School of Public Health, who has written extensively on vaccination policy.

Freeman’s opinion: It’s much too late for that.

“Months and months ago when the vaccine was being developed is when we should have been looking at these systems,” she said. “Not right now, not when the vaccine hits the street. This is not the right time.”

Congress just allocated some funds to local health departments in the newest relief package, but even this supplemental “funny money is just a Band-Aid for our country’s decades long lack of investment in our public health system,” Freeman added. “You can’t put a bandage over that when you’re dealing with a pandemic.”

READ MORE: How some states are administering Covid-19 vaccines at twice the speed of others

‘Like trying to get concert tickets’

To prep for a Monday, January 11 debut, DeKalb County, Georgia, decided to soft launch its vaccine registration system for ages 65 and over on Friday at noon.

“And by Sunday, we had 20,000 registrations. Now assuming you got through, a registration is not an appointment, it just means you filled out the paperwork,” said Dr. Sandra Ford, chief executive officer for the DeKalb County Board of Health, who oversees the vaccine rollout.

“Our first allocation of vaccine was 2,500 doses,” Ford said. “It was like trying to get concert tickets — you just kept calling, calling, calling.

“Our system was overwhelmed, and we had to close it down,” she added. “It made no sense to continue to take registrations until we got those people appointments.”

Wilkinson heard chatter about the launch on the radio and social media. She sat down at her computer Friday and was able to successfully fill out the lengthy, complicated questionnaire, only to receive a reply that no appointments were available.

Like many of her friends on social media, she was frustrated with the thought of having to redo the time-consuming application. Unlike many, she had the idea to message the county health department on its Facebook page to ask if that was necessary.

“I messaged the page and got a very quick answer from somebody that no we didn’t, which was just amazingly helpful,” Wilkinson said. “And I’ve had questions at several points along the way and went back to the Facebook page because they were responding to me.”

In the wee hours of Sunday morning an email popped into her inbox — an appointment was available. The message, however, said vaccines were only being given to health care workers. She paused, not wanting to take an appointment away from the dedicated women and men who are on the front lines of the fight against the coronavirus.

Many would have stopped right there, believing it was not yet their turn. But her IT background led Wilkinson to believe it was more likely that health department programmers had not been available over the weekend to update the email’s language to reflect the new phase 1b process.

“It made total sense to me that they were behind on updating the form,” Wilkinson said.

“When people see that stuff online they say ‘Oh, look, why isn’t it working right?’ It’s because the ‘hamsters in the cage’ haven’t been fed over the weekend so they won’t get on the wheel to make it run,” she said with a chuckle.

Click after click went by until, suddenly, success. An open appointment for Tuesday!

“You have to quickly fill in the name and address fields and submit it as they fill up quickly,” Wilkinson posted on Facebook and her local neighborhood app, NextDoor. “Hope this is helpful for some of you who are trying (to) navigate this.”

Wilkinson’s wife, Susan Phillips, received an email Monday with the “same verbiage about health care workers,” so Wilkinson double-checked on the health department’s Facebook page. Indeed, she was told, the form letter had not been updated yet.

Another Facebook question: Could she and Susan go together even though their appointments were at different times and stations? Yes, she was assured, they could.

For Wilkinson, any lingering frustration with the process melted away at the vaccination site. Hundreds of Georgians were quickly vaccinated in their cars in a calm, professional process that rivaled a well-oiled assembly line.

“Oh my god they were so organized,” Wilkinson said. “We got in line and there were like four or five cars ahead of us. The tent was big enough they lined the cars up, side by side so there were two lines going through at once. It actually took us longer to sit and wait afterwards to see if we might have a reaction than it did for the whole rest of the process.”

As for the frustrating sign-up process? Those are kinks to be worked out as more and more groups enter the vaccine distribution line, Ford said.

“The expectation that this vaccine effort is going to be handled exclusively by public health, that’s a fantasy. There’s just too much to do,” Ford said.

“Hospitals are supposed to be stepping in, pharmacies, even large chain grocery stores,” she added. “Right now, I don’t really have a clear picture of who else is helping us and where to send folks. So I certainly feel like we’re out here swimming by ourselves.”

What to do

First, start with a call to your primary care doctor. They can confirm which phase you should be in — definitions can change from state to state — and give you an idea of when vaccinations are expected to begin in your local community health and hospital systems.

Next, check the Covid-19 vaccination page on your state health department’s website. Most have links to county-level appointment sites where you can sign up, and emails where you can direct questions.

For those who are less internet savvy, each state also provides a phone number. Be patient, experts suggest, as the lines are often busy.

To assist, CNN has created a list of vaccination information pages for all 50 states and territories found below. The phone number, email and website for each state is included (see chart below).

It also never hurts to do your own detective work. Stay tuned to local radio and television stations for updates on openings of vaccination appointments, experts say. Often tips are posted on social media sites or sent via text between friends and family.

DeKalb County, Georgia, for example, released hundreds of new slots for upcoming vaccinations one evening midweek. Texts between friends flew — and the slots were gone in mere hours.

And when you are lucky enough to book an appointment, please don’t double- or triple-book. Such behavior has been leading to no-shows at vaccination sites, officials say, endangering the rollout of vaccines, which have a very short shelf life once thawed.

Once a vial of Moderna or Pfizer vaccine has been opened, it must be used within six hours or discarded, according to the US Centers for Disease Control and Prevention. That’s been happening in some distribution sites throughout the US, CNN has found.

Above all, be patient, experts suggest. Vaccine supply lines will be ironed out, and soon pharmacies, grocery stores, doctor’s offices and clinics will be able to administer the vaccine.

“This will be a multi-month process, and there will understandably be frustration,” said Yale’s Schwartz, “not just because of technology, but because of the waiting time to get an available appointment.

“And one of the really important challenges will be both to manage expectations and try to plead for patience from the public,” he said.