On April 16, Angelina Proia was one of thousands of people tuned in to New York Gov. Andrew Cuomo’s daily Covid-19 briefing. That day early in the pandemic, the news was encouraging; graphs flashed across the screen showing hospitalizations were down, along with ICU admissions, there were fewer deaths than the days before, and the message was “we can control the beast.”
But for Proia, it couldn’t get worse. That morning, she lost her dad, Richard Proia, a fun-loving, kind-hearted and otherwise healthy 66-year-old, to Covid-19.
She wanted to see those numbers cross her screen, though, because she knew her dad was part of them. She wanted his loss to be acknowledged and her experience to be validated.
“It was a small comfort to me to see the leader of my state show deference to the virus that killed my dad,” Proia said. “It made me feel less alone.”
Proia was looking for leadership when she turned to Cuomo back in April. Many people around her deny that Covid is real, questioning the validity of tests and other reported facts, she said.
“But I have my state leader affirming and validating that my dad was a Covid loss and taking it into account when he makes his decisions,” she said. “By acknowledging my father’s loss through the numbers, I know he’s sorry for my family and takes it seriously.”
By April 16, about 37,000 people in the US had lost their lives to Covid-19.
Now, the death toll is approaching half a million. In the past week alone, more than two people died of Covid-19 every minute.
There has been a near constant stream of Covid-19 data for more than a year now. The White House COVID-19 team publishes a daily report with dozens of graphs and tables tracking cases, deaths, test positivity rates, community vulnerability and more. Multiple organizations – from Johns Hopkins University to the COVID Tracking Project – have built or shifted significant resources to monitor this data and forecast trends. And yet, critical gaps in data – particularly to understand racial and ethnic inequities – persist.
Mothers, fathers, brothers, sisters
As more and more Americans lose loved ones to Covid-19 or fall ill themselves, summarizing very human experiences of fear and grief into statistics may feel cold.
“Numbers can be a bit sterile,” said Bob Anderson, chief mortality statistician for the US Centers for Disease Control and Prevention. “But these numbers are people – mothers, fathers, brothers and sisters. I have to constantly remind myself of that.”
Anderson has worked through the HIV epidemic, the opioid epidemic and more over the 24 years he’s been in this role. But the Covid-19 pandemic is different, he said.
“Those were concerning, of course, and the numbers were relatively large, but not on the scale that we’re seeing the Covid deaths,” he said. “This is not something we’ve had to deal with.”
The demand for information is enormous, too, he said, and rightly so.
“With something like this, knowledge is power,” Anderson said.
Mortality data are widely used to help prevent disease, by ensuring resources are allocated properly and programs are assessed comprehensively. And it’s uniquely personal.
“As far as health data go, mortality data is really the only dataset in which we have a record for each person,” Anderson said.
A moment for each one
Amid the pandemic, West Virginia Gov. Jim Justice has found a way to respect both the anonymity required of the data and the individual life behind each Covid-19 death record.
As is often done across the country and the world, Covid-19 data on West Virginia’s dashboard are summarized by age, gender and county.
At the start of his press briefings each Monday, Wednesday and Friday – before moving into the graphs and trends – Justice reads through each new death, identifying the West Virginians who have recently lost their lives to Covid-19 with these data points: age, gender and home county.
Even without knowing their names, Justice said the connection is personal to him.
“As you’re moving through the age and the gender and the county, you’re thinking across West Virginia and the close-knit, loving people that live here. Oftentimes, my mind drifts to situations where I’ve been in someone’s home in a specific county or I’ve been on a trout stream in a specific county,” Justice said. “In my mind I’m seeing families in these communities at a dinner table or on a picnic or on a trout stream. It’s overwhelming at times.”
While reading through, he’ll often go back to correct the mispronunciation of a county or a number that he muddles.
“All I want is these people to be remembered, and I just don’t know of another way to do it right now,” Justice said. “If I can give them an ounce of dignity, I will. I would give them a gallon.”
To Dr. Jeremiah Hayanga, of the West Virginia University Health System, who has treated some of the state’s sickest Covid-19 patients, the heartfelt, genuine empathy in the governor’s messages is apparent.
“It’s a model in compassionate leadership,” he said, and the gravity with which the governor approaches the situation trickles down as decisions are made throughout the state – from local health departments to personal behaviors.
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When Luke Velickoff, a registered nurse working in WVU’s cardiovascular intensive care unit, first heard Justice read through the Covid-19 deaths, he said he was “taken back with emotion.”
“To hear the words, ‘our 1,743rd death is a fifty-six-year-old female from Barbour County,’ is sobering, to say the very least,” he said. “The numbers and statistics speak volumes, but when you actually see and spend countless hours with these individuals, it truly reminds you of the humanity of it all.”
When Justice read out the first deaths, “it was tragic,” he said.
In the first week of this year, Justice read through a list of more than 150 individuals.
It took more than a half an hour.