The aim of The COVID Tracking Project’s work on long-term-care (LTC) data was to ensure that the pandemic’s toll on residents and workers in a broad range of LTC facilities was entered into the historical record. To achieve this, we manually compiled figures once a week from every state and territory that reported case and death information for these facilities.
After compiling that data for ten months, here is what we have learned.
1. We did not protect the vulnerable
Less than 1 percent of America’s population lives in nursing homes and other long-term-care facilities. Deaths among this tiny fraction of the country accounted for at least 34 percent of all US COVID-19 deaths during the period we tracked this data.
The residents of long-term-care facilities were by far the most vulnerable of all US populations throughout the pandemic’s first year—and they were not by any measure protected until vaccines finally began to reach them in late December, nearly 10 months after the first known outbreak of COVID-19 in a US long-term-care facility.
2. Our failure to protect LTC residents resulted in staggering losses
Using state LTC data and federal nursing home data, we can estimate that as of March, 2021, about 8 percent of people who live in US long-term-care facilities have died of COVID-19: Nearly one in 12. For nursing homes alone, the figure is nearly one in 10. (Read more about how we arrived at these figures.)
3. We still don’t know the full toll of the pandemic on LTC residents and workers
These figures are known undercounts, and do not include some deaths from the earliest part of the pandemic. Federal data on COVID-19 in nursing homes covers only skilled nursing facilities, and excludes the experience of approximately 800,000 people living in assisted living facilities and similar residential care communities. Because of the historical deaths missing from both state and federal data, non-standard state reporting, and the absence of federal reporting requirements for assisted-living facilities and other forms of long-term-care facilities besides nursing homes, we believe that the true toll of the pandemic among these workers and especially residents is higher than these figures can show.
4. The devastating toll of COVID-19 among long-term-care residents was the result of both new and longstanding failures of care and reporting
In April of 2020, a CMS official told Politico that “CMS is using every tool at our disposal to keep nursing homes free from infection. CMS’s guidance and actions are based upon the most recent CDC recommendations informed by real-time information being gathered from experts on the ground in areas with large numbers of COVID-19 cases.” In the same piece, we learned that the CDC wasn’t “formally tracking the numbers of homes, nor the number of people infected in them.” A year later, we understand that the federal data we do have, which is routed through CMS, is self-reported and incomplete at best.
When, in the spring of 2020, the Trump Administration called on all US nursing homes to test all their residents, the federal government failed to provide the infrastructure or funding to make this testing regimen feasible. Three months later, the administration began an effort to deliver free rapid-testing machines to 14,000 long term care facilities—but this provision turned out to include an extremely limited number of testing kits, requiring each facility’s administrators to source and pay for the test kits required to continue routine testing. That same month, the nursing home industry lobbied for protection from lawsuits brought by the families of patients who died of COVID-19 in their facilities. In late July, nursing homes were still reporting that FEMA’s attempts to provide even two weeks’ worth of PPE for their workers were in shambles.
In 2013, a joint investigation by Frontline and ProPublica found that residents of US assisted-living facilities suffered tragic accidents, abuses, infections, and other failures of care due to “a mishmash of minimal state regulation” and the absence of federal oversight. Federal regulations, by contrast, require skilled nursing facilities to report health and safety data directly to CMS for evaluation and publication in the form of star ratings—theoretically resulting in greater protections for residents and more informed consumer choice. But a recent New York Times evaluation of CMS’s own data found that US nursing homes routinely report incorrect health and safety data to the federal government, that this data consistently makes facilities appear safer than they are, and that problems uncovered in in-person inspections are neither reflected in the data nor in CMS’s star ratings system. Times reporters found that more than 2,400 of the 3,500-plus facilities CMS rated with 5 stars were found to have problems with infection-control or had received citations for patient abuse.
In May of 2020, the General Accountability Office issued a scathing report on known pre-COVID deficiencies in infection control in US nursing homes, in response to a request for evaluation from Senator Ron Wyden, the ranking member of the Senate Finance Committee. In March of 2021, the GAO reported that many of its recommendations for protecting the residents of long-term-care centers had still not been implemented by the federal government, including a September 2020 recommendation that HHS “develop a strategy to capture more complete COVID-19 data in nursing homes retroactively back to January 1, 2020.”
It is abundantly clear from these and many similar reports that long-term-care facilities in the US are subject to insufficient oversight with respect to protecting their residents, that data-gathering efforts to date rely on self-reporting from institutions known to under-report their health and safety problems, and that the federal government failed to shore up these floundering institutions during multiple surges of infection throughout the year.
5. The vaccines are working
At this point, more than a year into the US pandemic, it is increasingly clear that concentrated state and federal efforts to immunize workers and residents in long-term-care facilities are resulting in dramatic decreases in deaths related to outbreaks in these facilities. All COVID-19 deaths have been declining for many weeks, but the share of these deaths that are associated with nursing-home outbreaks has declined substantially.
After a year of unthinkable—and only partially measured—illness and loss among Americans living in nursing homes and other LTCs, we are finally achieving what so many officials claimed they were doing for the entire length of the pandemic: protecting our most vulnerable.
We need better data and decisive, evidence-based action
Our experience of compiling scattered, inconsistent state-level reporting has made it very clear to us that unless the federal government takes action to require—not merely allow or encourage—complete public health data reporting from all long-term-care facilities, the true toll of outbreaks in these facilities will never be fully known. To begin to protect our most vulnerable, regulators must fundamentally change their approach to the oversight of these facilities—and this oversight must include mandatory data collection, rigorous analysis, and then swift action based on what the data reveals.
Thanks to the work of our long-term-care tracking team, we know that nearly 175,000 lives were lost to COVID-19 outbreaks in LTC facilities—and that even these figures are missing the accounts of many other lives lost but not reported. No more complete accounting has yet been made by any government agency—nor have we yet seen any true reckoning with the public and private actions and inactions that resulted in this devastating toll.
In our analysis of federal data on nursing homes, we have made a series of ambitious but crucial recommendations to policymakers who seek to understand the pandemic and prevent future disasters. These recommendations include the acquisition of full historical COVID-19 data from all US nursing homes and, just as importantly, the development of mandatory reporting structures for all long-term-care facilities in the country.
Crucially, however, no amount of reporting will result in safer environments for LTC residents unless better data results in decisive action to fully address the long-term-care industry’s longstanding and widely reported failures of care.
Artis Curiskis is outreach & reporting co-lead at the COVID Tracking Project and collaboratively runs the CTP special projects Long-Term Care COVID Tracker and City Data.
Conor Kelly is the director of data analytics at Hanover Research.
Erin Kissane is a co-founder of the COVID Tracking Project, and the project’s managing editor.
Kara Oehler is outreach & reporting co-lead at the COVID Tracking Project and collaboratively runs the CTP special projects Long-Term Care COVID Tracker and City Data.
More “Long-Term Care” posts
Vaccines Begin to Arrive as Cases and Deaths Keep Rising: This Week in Long-Term Care COVID-19 Data, Dec 16
Cases are up and known deaths in long-term-care facilities are the highest they’ve been since late May.
Giving Thanks and Looking Ahead: Our Data Collection Work Is Done
While our work to compile COVID-19 data has concluded, we will continue to share research, analysis, and documentation in the months ahead. We are enormously grateful to the hundreds of volunteers who made this work possible.
Federal COVID Data 101: Working with CMS Nursing Home Data
Here’s what we know about the only federal dataset on COVID-19 outcomes in long-term care facilities.