CMS has finally posted a database of reported deaths by facility for approximately 30,000 nursing homes. The data is updated weekly and provides confirmation of the awful toll this disease is taking on our most vulnerable population. As of June 1, more than 40,000 residents and workers in long-term care facilities have died from COVID-19. And that number is most certainly an undercount.

Information is still disjointed, in part because some states include group homes in their reports to CMS, and others only provide data for institutional long term care settings. Assisted living facilities are not part of the dataset since they’re not federally regulated. But any way you look at it, the numbers are staggering.

By the end of May, COVID-19 deaths in nursing homes accounted for more than half of all deaths in many states; in some, like Minnesota and Rhode Island, it was more than 80% of all deaths. Amazingly, about 12% of long-term care homes have yet to submit data as of June 1. It makes one question what they’re trying to hide.

USA Today did its own calculations, which they acknowledge are incomplete, and found at least 450 COVID-19 elder care facility deaths per day. Television station WCVB-Boston did an excellent job summarizing data from the Massachusetts Department of Public Health into this interactive table of COVID-19 cases and deaths in long-term care facilities. They described the figures as “staggering.”

But as researchers in this Journal of the American Geriatrics Society article point out, these figures are likely grossly underestimated. “Contributing to the underestimation of LTCF deaths is that in March and part of April, SARS-CoV-2 testing was largely unavailable to LTCFs and COVID-19 deaths were only counted as such if backed by a positive test.”

Several media outlets have crunched the numbers and have found mismatches between state and federal data. Some facilities have been hit with fines for covering up COVID-related deaths; others don’t include transfers to hospitals in their totals.

While states are required to report this information to CMS, some states have fought to keep information from the public. AARP posted this very helpful article describing what information each state is releasing and where to find it.

Meanwhile, Maggie Severns and Rachel Roubein at Politico report that some facilities are “jumping at the chance” to accept sick residents, due to higher reimbursements. This puts existing residents at greater risk and opens the door to more substandard care. Their story is chilling on many levels, as they point out that most of the homes accepting infected patients already are providing sub-standard care, and have a history of infections or patient neglect. In some states, assisted living facilities also are being paid to accept COVID-19 patients or convert to all-COVID facilities.

I can’t even fathom what this approach will do to the death count. Every one of these “data points” is someone’s parent, spouse, grandparent, aunt or uncle. They not only deserve to be counted, but they also deserve to be remembered. Here are some questions to ask:

• How does your state data match up with the federal database? If there are discrepancies, why?
• Which nursing homes are reporting the most COVID-related fatalities?
• Have these facilities had a prior history of problems with infection control, staffing, or safety issues? What steps are they taking to minimize risk?

Update: Nursing Homes Shocked at ‘Insanely Wrong’ CMS Data on COVID-19

Liz Seegert is an independent health journalist based in New York’s Hudson Valley, who writes about caregiving, dementia, access to care, nursing homes and policy in her role as AHCJ’s Health Beat Leader for Aging. Seegert helps provide context for reporting on this multidimensional issue with story posts, tip sheets, analysis, data and one-on-one interviews with aging experts.