Residents of assisted living facilities are one of the most vulnerable groups to infection, serious illness and death from COVID-19 — so much so, they were placed at the top of the priority list along with nursing home residents and health care workers.
But nearly three months after a vaccine became available, some in assisted living in Wisconsin still haven’t finished their two-dose vaccine series. Wisconsin was one of the last states to start giving shots in earnest to assisted living residents, and by that time, the state was already moving on to lower priority groups.
That has left residents and family members baffled and wondering what led to the delay for assisted living facilities when the endeavor was, quite literally, a matter of life and death.
“Every week that goes by where the most vulnerable are not vaccinated increases the number of these people who will die, and we’ve seen that,” said Michael Wasserman, a geriatrician who was a member of a National Academies of Sciences, Engineering, and Medicine committee that helped inform national decisions on vaccine priority groups.
Michelle Sheldon was one of those living closest to the pandemic.
She works at a group home, and with both of her parents in long-term care facilities, she hoped the start of vaccinations would mark a slow return to normal.
But after months of restrictions and precautions — and three weeks after a vaccine became available — her mother, Julie Mickler, tested positive for COVID at her assisted living facility in Pewaukee. She died Jan. 14.
“I wish it had been here earlier,” Sheldon said of the vaccine.
State health officials have offered shifting explanations for why the state was last.
The reasons are complicated and intertwined with a program that the federal government created to have Walgreens and CVS administer COVID-19 vaccines at most of the country’s long-term care facilities — both nursing homes and assisted living facilities.
Wisconsin made nursing homes ‘first priority’ over assisted living
Under the federal program, states could decide when to activate the vaccination program and whether to start in nursing homes and assisted living at the same time, or separately.
Wisconsin decided to start only in nursing homes.
While vaccine shots got underway in nursing homes on Dec. 28, state officials didn’t officially launch the program for assisted living until almost a month later, on Jan. 25.
Wisconsin Department of Health Services spokeswoman Jennifer Miller said it was “the first priority” to get nursing home residents vaccinated because they “are the most vulnerable to COVID-19.”
But geriatric experts say assisted living residents are also highly vulnerable to COVID-19.
“A lot of these facilities have residents who are just as frail as those living in nursing homes,” said Wasserman, who is also immediate past president of the California Association of Long Term Care Medicine. “That’s why assisted living facilities and group homes were not supposed to be deprioritized.”
A Centers for Disease Control and Prevention study found that in states with available data, an average of one in five assisted living residents infected with COVID-19 died. The study did not include nursing home residents, but data reported to federal regulators suggest about the same proportion of nursing home residents infected with the virus ultimately die.
Wisconsin chose to give most of vaccine to health care first
On top of nursing homes, the state also chose to give most of its initial vaccine supply to health care workers.
Miller stressed the state had a limited supply of vaccine and that it was “imperative” to inoculate health care workers who had been battered by a surge in COVID-19 cases that left hospitals overwhelmed and short-handed in November and December.
“Health care workers provide care for not only people with COVID-19, but people with other, often life-threatening conditions,” she said in an email to the Milwaukee Journal Sentinel.
She said having enough doctors, nurses and other medical personnel working, and not out sick, is a “very important piece of being able to save lives.”
In Wisconsin, COVID-19 hospitalizations peaked in November, but hospitals continued to face severe staffing shortages and capacity issues into December. The staffing shortages were so bad that some hospitals in Wisconsin told workers who had been exposed to COVID-19 to return to work before their quarantine period was over.
Dr. Ruth Link-Gelles, who helped lead the federal program for long-term care immunizations for the CDC, said that a lot of states were grappling with how to balance vaccinating health care workers and long-term care residents.
“There was this thinking in a lot of states — and I think CDC was pretty on board — that maybe you want to do a week or two of health care worker vaccinations: get your ER docs, your ICU docs and stuff done and your nursing staff done, and then start long-term care,” she said.
Wisconsin had to reserve doses for the program, but possibly less than claimed
Wisconsin had to transfer doses to the federal program before vaccinations could begin.
Wisconsin health officials repeatedly said that under the program rules, before they could begin, they had to have enough first doses to cover half of the people in assisted living. They said they were saving up the doses over “a number of weeks.”
But according to the CDC, Wisconsin could have put much less vaccine into the program to get it going weeks earlier — enough for only a quarter of the people.
In all, the CDC estimated there were 140,000 people living and working in assisted living, with another 57,000 in nursing homes.
A CDC spokesperson said Wisconsin health officials were notified of the one-quarter option on Dec. 19.
Miller seemed to contradict that, telling the Journal Sentinel that health officials were told of the option verbally on Jan. 6 and in an email Jan. 7.
Either way, a Journal Sentinel analysis shows that the state had enough vaccine supply to begin shots in assisted living earlier than it did.
Wisconsin health officials have offered sometimes contradictory explanations of the program, on several occasions implying they had contributed more doses to the program than they actually had or saying they needed more doses than they actually did to activate the program. In January, a DHS spokeswoman erroneously told the Journal Sentinel that the state had to transfer all 140,000 doses to begin giving shots in assisted living.
Miller later conceded the state could have started shots in assisted living on Jan. 11 at the “very earliest,” though she said that would have “drained” vaccines from health care workers.
The information from the CDC indicates the state could have started even earlier than Jan. 11.
On any given week, Wisconsin’s Moderna supply was enough to cover a quarter of the assisted living group — according to the CDC, enough to activate the program.
The state theoretically could have paid a week’s worth of doses to the program — about 35,000 doses — at any point, to begin giving shots as early as Jan. 4.
State officials had little advance notice of how much vaccine to expect
The situation was also complicated by the fact that state officials didn’t have a very clear picture of how much vaccine they would get weeks down the line, Miller said. Early on, officials only found out a week in advance exactly how much vaccine they would get, she said.
Early fluctuations in the state’s weekly supply made it difficult to plan for the federal program, Miller said, and led to doubts that the state would have enough doses from week to week to fully support the program.
Wisconsin’s assisted living population is also relatively large compared to other states, state officials said, and so required a larger share of the state’s vaccine supply than in other states.
Minnesota, in similar situation, started two weeks earlier than Wisconsin
Minnesota is further along than Wisconsin in vaccinating its assisted living residents and offers a roadmap for how, under the program rules, Wisconsin could have started shots in assisted living earlier, while still giving doses to health care workers.
Every state got a bevy of Moderna vaccine the first week it was available, about three times the number of doses they would get in subsequent weeks.
Minnesota, which has a similarly high long-term care population, put more of its initial Moderna vaccine allotment toward the federal program than Wisconsin did and was able to launch the program in assisted living on Jan. 11, two weeks before Wisconsin.
As in Wisconsin, Moderna was the only type of vaccine used in the Minnesota facilities participating in the federal program.
Minnesota committed about two-thirds of its initial Moderna doses to the program, enough to cover everyone living and working in nursing homes and some in assisted living, according to numbers provided by John Schadl, a spokesman for the Minnesota Department of Health.
Then, Minnesota gradually put more doses toward the program each week to support its assisted living contribution, while still leaving some Moderna for other groups, according to Schadl’s numbers.
Meanwhile, Wisconsin put well under a third of its initial Moderna doses into the program — only enough to cover half of the people living and working in nursing homes, according to numbers provided by Miller.
Over the next two weeks, Wisconsin contributed the rest of the doses needed for nursing homes.
It wasn’t until the fourth week of Moderna allocation that Wisconsin moved doses to the program for assisted living, according to Miller.
Link-Gelles, the CDC official who helped lead the program, said she didn’t think it was a “bad thing” that Wisconsin started in nursing homes and waited to begin assisted living.
“I think there’s pros and cons to doing it both ways,” she said.
At the same time, she didn’t see anything in the program rules that would have prevented Wisconsin from starting in assisted living earlier, if officials had wanted to.
She said that the program was flexible and that the CDC worked with states that wanted to put fewer doses into the program over a longer period of time.
“We would just have a back-and-forth about, ‘Does this make sense for the state? Does this make sense for the pharmacy?’ ” she said in an interview. “We’ve worked really closely with states to come up with the best sort of cadence that works for the state.”
Under one scenario from the Journal Sentinel analysis, Wisconsin could have committed enough doses from its first Moderna allotment to cover all of the first doses for nursing homes and some for assisted living.
From its next allotment, Wisconsin could have contributed more to assisted living, enough to cover a quarter of the assisted living group.
That option would leave a balance of Moderna doses for health care workers those first two weeks, in addition to all of the doses from Pfizer.
And shots could have begun in assisted living facilities on Jan. 4.
Long-term care program was flawed, but other states still came out ahead of Wisconsin
In the end, the estimates for how many doses Wisconsin would need to set aside were much too high.
The CDC and the major pharmacies involved, CVS and Walgreens, have acknowledged they overestimated how much vaccine they would need to give shots to all staff and residents.
The number of vaccines needed was determined using a formula based on bed counts, which was then multiplied by two to account for staff members, according to the CDC and the pharmacies.
But there were fewer residents than beds in many long-term care facilities, and more workers than expected refused to be vaccinated.
Some states, including Minnesota, had to take back some of the doses they put into the program because the pharmacies ultimately did not need them or they were carrying out vaccinations too slowly.
To be sure, shots in assisted living began ramping up in Wisconsin the week before the official Jan. 25 start, but Link-Gelles said it was in a relatively small number of facilities.
It is unclear exactly how many assisted living facilities in Wisconsin have received both doses of the vaccine, as some have left the federal program. But of the nearly 3,400 facilities covered by either CVS or Walgreens, a little over half have received a first and second vaccine clinic, according to data released by the pharmacies on Monday. By comparison, a little over 90% of Minnesota facilities vaccinated through CVS or Walgreens have had a first and second clinic.
In almost every state, CVS and Walgreens say they are done or nearly done with their first and second vaccine clinics in those assisted living facilities paired with them, according to their data. Wisconsin is lagging behind every state in terms of percentage of facilities to have had a first and second vaccine clinic, according to the data from the pharmacies.
It’s unclear how many people in assisted living have died since a vaccine became available.
While federal regulators publicly report how many nursing home residents have been infected and died with COVID-19, similar data is not available for assisted living facilities, which are state-regulated.
The Wisconsin health department reports how many COVID-19 deaths were of long-term care residents, but does not break out how many were assisted living residents. Also, the state is missing data on almost half of the people who died from COVID-19 and says it doesn’t know whether they were long-term care residents.
‘I wish it had been here earlier’
As someone who works at a group home, Michelle Sheldon received her vaccine in February, but the loss of her mother left Sheldon “broken.”
Julie Mickler, 75, had lived at Matthews of Pewaukee, a memory care and assisted living facility, for a few years when she tested positive for COVID-19 on Jan. 5, her daughter said. She died on the 14th, two weeks before the facility got the vaccine.
“We just lost a shining star, probably the sweetest person, the kindest person I’ve ever known,” Sheldon said.
The two were close, living within blocks of each other while Sheldon was raising her family.
Both of them were book lovers — Mickler especially liked Stephen King novels — and when Sheldon’s son was born, they went to a local bookstore and “went nuts” picking out children’s books. It’s a love they tried to pass on to Sheldon’s kids, taking them to author visits and book signings.
Mickler started to lose her memory while in her early 50s and was diagnosed with early onset Alzheimer’s, Sheldon said.
The disease progressed, and a few years ago, Mickler moved into Matthews of Pewaukee, where Sheldon would visit as often as she could during the pandemic.
Her mother, who by this point had trouble speaking, didn’t say much. They would normally spend visits listening to Neil Diamond, the Doobie Brothers and other bands they’d seen in concert together, or taking pictures of themselves on Snapchat.
“That was our thing to giggle at,” Sheldon said.
Sheldon, who used to hide from cameras, lost that fear once she started taking pictures with her mom.
“Mom would always ask me how I could possibly die and leave my kids without pics of their mother,” she wrote on Instagram in January.
“Now I understand, and I am so thankful that I have so many fun photos with my mom.”
The last time Sheldon saw her mother was on Christmas Eve.
Sheldon said she’s just trying to take it one day at a time. She tries to take comfort in knowing that her mom is at peace now; she had suffered from Alzheimer’s for more than 20 years.
But the loss hit her harder than she expected.
“It just felt like I’d got literally kicked in the chest, and I couldn’t stop (crying),” she said.
An earlier version of this story included incorrect information about the status of Michelle Sheldon’s father’s COVID-19 vaccination. He had not received the vaccine by the time this story published.
Sarah Volpenhein is a Report for America corps reporter who focuses on news of value to underserved communities for the Milwaukee Journal Sentinel. Email her at firstname.lastname@example.org. Please consider supporting journalism that informs our democracy with a tax-deductible gift to this reporting effort at JSOnline.com/RFA.