HARRISBURG — Since the coronavirus emerged as a global threat, older adults have proved to be most acutely affected and at risk of complications and death. This is particularly notable for Pennsylvania, which has one of the oldest populations in the United States and is home to about 126,000 people in nursing homes and assisted living facilities.
Yet as the virus gained a foothold here and spread rapidly through these facilities — whose residents now account for half of deaths in the state — staff members, residents, their families, and the wider public still know very little about what’s going on inside, and whether the companies that run them have the tools or staffing needed to protect people and save lives.
State and federal officials have not released patient and death data for individual homes, making it nearly impossible to examine if facilities are properly responding to the crisis. State officials do not require nursing homes to disclose cases to residents, family members, or the public. At the same time, federal regulators have halted regular inspections, and the state has said it would only investigate complaints that indicate patients are in immediate jeopardy.
Taken together, they have left the companies that run these homes to largely police themselves.
The lack of disclosure “endangers not only the residents and the staff but the whole community,” said Charlene Harrington, a professor of sociology and nursing at the University of California, San Francisco. “The community should be outraged.”
Last week, U.S. Sen. Bob Casey (D., Pa.) sent a letter asking the Centers for Medicare and Medicaid Services and the Centers for Disease Control and Prevention to release a list of nursing homes nationwide that have active cases. He said the information was vital and should be provided by the government “on a real-time basis.”
On Monday, Ohio Gov. Mike DeWine said his state would change course and make its list of nursing homes with cases public, as well as require, not just encourage, facilities to notify residents and families within 24 hours when positive cases occur. Kentucky, Minnesota, and Washington, D.C., have also released facility lists.
Nate Wardle, a spokesperson for the Pennsylvania Department of Health, said a list of specific facilities cannot be released because the data are being collected through multiple sources.
“Last thing we want to do is provide something and then have to correct it,” he said by email.
Only this week did the Department of Health begin posting online the number of COVID-19 cases and deaths in long-term care facilities, broken down by county. As of Thursday, there were 3,290 cases in 306 of Pennsylvania’s roughly 1,900 facilities, according to the data.
The state also reported 365 deaths among nursing home residents.
Through news reports and interviews with sources and providers, Spotlight PA was able to identify just under 50 facilities with reported cases. In the absence of a complete list, the news organization is asking for the public’s help in identifying affected facilities. If you have information about cases or deaths, submit it below or contact firstname.lastname@example.org.
Nationwide, the virus is believed to be in nearly 3,500 facilities, killing more than 5,600 residents, NBC News found. But that too is based on incomplete data provided by states that have released varying levels of information.
Sen. Maria Collett (D., Montgomery), the minority chair of the state Senate Aging and Youth Committee, called the lack of information in Pennsylvania “beyond unfortunate.” Without it, Collett said, it is hard to help facilities experiencing staffing shortages or a lack of equipment.
Collett, who formerly worked as a nurse in a long-term care facility, said there is more information provided about the flu and the common cold than what the public can know now about the virus.
“If we are not doing those same things when we are staring down the face of something as really critical as the coronavirus, then we are failing people,” she said.
The state gets information about infections and deaths in nursing homes through an online system as well as administrators who report to department officials, Wardle said.
Nursing homes are required to use an electronic patient safety system to notify the state about serious infections, including respiratory illnesses, within 24 hours of identifying them. That means the state has the information necessary to release breakdowns by facilities.
If it chose to release that data, that would be fine with Lori Mayer, a spokesperson for Genesis HealthCare, a for-profit company that operates 38 facilities in Pennsylvania. But Mayer declined to release such a list for all Genesis locations in the state.
The company has 350 confirmed cases statewide in 11 homes, Mayer said. That includes cases and at least one death at Powerback Rehabilitation in Philadelphia. A Genesis facility in Lehigh County has at least 87 cases among residents and staff, and 10 residents who have died, news outlets have reported.
“I don’t want to provide a laundry list,” Mayer said. “We don’t provide that level of detail holistically. It is just not something we would do at this point.”
Many facility administrators contacted by Spotlight PA did not return messages seeking comment. Some provided general statements about resident care, but did not confirm whether cases had been detected. Others simply said they had no comment.
One nurse, when asked about her facility’s coronavirus mitigation plans, said, “We don’t have any.”
“They are holding this information with clenched fists,” said Brian Lee, executive director of Families for Better Care, a national long-term care watchdog group. “It is the worst-case scenario for residents in these facilities — this virus coupled with the poor [facility] track records.
“You’d think public officials would be more empathetic. It just is mind-boggling,” Lee added.
Under Gov. Tom Wolf’s emergency disaster declaration, the state said on March 31 it would only conduct inspections for complaints that indicate a resident is in immediate jeopardy or for specific infection control issues identified by federal regulators. But advocates say the lack of transparency makes it hard for families or staffers to know about problems to report.
Families are unable to visit to see if loved ones are getting the care they need. Staffing shortages, which were a problem before the pandemic, are exacerbated by nurses and administrators who have become sick or were exposed and must go into a 14-day quarantine. As of Thursday, the state reported 394 staff had tested positive for the virus.
Ombudsman programs — advocates, often volunteers, meant to act as the voice for at-risk patients — have been cut off from visiting residents since mid-March, communicating only by intermittent video or phone calls.
“It is sad to see people dying and not really know what’s happening,” said Diane Menio, executive director of the Center for Advocacy for the Rights and Interests of the Elderly, which provides ombudsman services in Philadelphia.
“Usually you have people going in and out of facilities and you can observe what is happening, but there is no way to do that right now,” she said. “There is not a minute that goes by you don’t worry when you can’t see the person, when you can’t really communicate.”
Daniel Simmons-Ritchie contributed to this story.