Few places have shown themselves more vulnerable to COVID-19 than nursing homes, the source of more than a third of reported deaths from the virus in North Carolina so far.
However, unlike in some other states, the department tasked with responding to the novel coronavirus and keeping the public informed isn’t naming the facilities experiencing outbreaks.
The North Carolina Department of Health and Human Services reported 40 outbreaks at nursing home facilities in 26 counties as of Thursday morning.
Some counties are identifying local nursing homes, but others are not.
The state and county decisions have left the public in the dark about the identities of more than a half-dozen nursing homes with outbreaks of the deadly virus.
Now advocates with the state’s AARP chapter — as well as a coalition of North Carolina media outlets — are pushing back, asking Gov. Roy Cooper to reverse course and release additional information about COVID-19 outbreaks in nursing homes.
Access to information about a COVID-19 outbreak in North Carolina, defined by DHHS as two or more laboratory-confirmed cases in the same congregate living setting, varies depending on the county and, in some cases, the nursing home in question.
Friends Homes, which has two separate but neighboring facilities in Guilford County, has not yet had an outbreak, said executive director Arnie Thompson. However, if one occurs in the future, the facility plans to publicly announce it.
When there are gaps in communication, Thompson said, people fill the void with their own information.
“Not sharing anything does not help anyone,” Thompson said.
While DHHS is releasing the number of new outbreaks at nursing homes and other residential care facilities in counties across the state, the agency is not identifying which facilities have outbreaks or how large each outbreak is.
On its website, the department lists how many cases statewide are known to be at nursing homes, but does not specify the size of outbreaks or how many cases are in each county or individual facility, citing resident privacy.
“Providing specific health information, like small numbers of positive test results for a reportable disease in combination with the geographic location at the facility level, makes the protected health information of the individuals served by that facility identifiable,” DHHS said on its website.
Asked at a press conference on April 14 about the lack of information on nursing homes, DHHS Secretary Mandy Cohen said the department decided, to “strike the right balance” between the privacy of the facilities and public health interests, by not releasing that information.
An April 9 executive order by Cooper requires nursing homes to report COVID-19 cases to health officials immediately. But a review by a six-newsroom reporting collaborative found inconsistent practices among counties when it comes to disclosing information to the public about COVID-19 outbreaks at nursing homes.
Survey of counties find different results
Wake and Mecklenburg counties, the state’s largest, are among those that are publicly naming the locations of outbreaks in nursing homes.
Wake spokesperson Dara Demi said county officials had "detailed conversations internally with our legal, public health and communications teams" before deciding to reveal the locations of outbreaks publicly.
“We determined to do so was necessary to protect the public health,” Demi said.
At first, Mecklenburg County refused to identify individual facilities but reversed course last week after mounting public pressure.
“We hope this new information will help everyone better understand how this virus is impacting our community and the importance of protecting the most vulnerable among us,” Gibbie Harris, Mecklenburg County’s health director, said.
Others, like Cumberland County, say they're approaching disclosure on a case-by-case basis. Officials there disclosed an outbreak at Village Green Health and Rehabilitation Center in Fayetteville on April 15 after someone there died.
That was nearly two weeks after the facility disclosed a COVID-19 case on its own.
"The decision of how much to disclose requires the Public Health Director to balance the legal requirement that no disclosure of personal medical information can be made with the necessity to protect the public health," Cumberland County spokesperson Sally Shutt said in a statement. "That balance is not always going to produce the same level of disclosure."
In a statement, Village Green spokesperson Elizabeth Englund didn't address the company's policy on disclosure, but said the facility's leadership "is in very close communication with local, state and federal health officials to ensure we continue to take the appropriate recommended actions."
Like Cumberland County, Henderson County is relying on the facilities to individually identify outbreaks at their facility.
“We are reporting the aggregate number of cases in our county that are associated with LTCF’s, as that is a metric that our community is also interested in,” said Jodi Grabowski, a spokeswoman for the Henderson County Health Department, using an acronym for long-term care facilities.
In a follow-up email, an attorney for Henderson County said the county was not identifying specific facilities based on guidance from the UNC School of Government, which has told county agencies releasing that information could violate federal privacy laws.
That same post, however, also says “both HIPAA and the state [communicable disease] confidentiality law allow disclosure of communicable disease information that doesn’t identify individuals.”
In other counties with confirmed outbreaks, though, the county health departments refuse to identify facilities. Nursing homes aren’t announcing outbreak locations, either.
That’s the case in Guilford County, the site of two separate outbreaks.
Nine of the 21 nursing home facilities reached in Guilford County told a reporter that they did not have an outbreak. Six said they would publicly disclose if they did, while several other facilities were unclear about whether they would release the information to the public. Nearly a dozen facilities did not respond to multiple requests for answers regarding if they had an outbreak or if they planned on publicly disclosing such outbreaks.
Several news outlets have reported outbreak locations in Guilford County, but the reporting collaborative was unable to independently confirm them. The county has not yet fulfilled a public records request filed Wednesday for nursing home facilities with outbreaks.
In Wilson County, health officials said they are not releasing names of facilities that have outbreaks, although they work closely with them and facilities are allowed to announce if they see fit.
In Columbus County, which has seen a precipitous increase in cases over the last two weeks – even eclipsing the total of neighboring New Hanover despite being vastly less populated – the county health department has not publicly identified facilities with outbreaks, but only because the facilities themselves have self-identified. Columbus County officials said they would likely release the names of a nursing home with an outbreak if the facility didn’t release that information themselves.
Two facilities in Columbus have had outbreaks as of Thursday afternoon – including one in which patients who initially tested negative ended up testing positive five days later – for a total of 12 cases.
Health Department spokesperson Daniel Buck said when a facility contacts the agency with more than three cases, it reaches out to the state, and all three parties collaborate on what to do. So far, Buck said, the facilities have taken it upon themselves to announce the outbreaks to the public.
"We haven't had to cross that bridge, fortunately," he said.
Health officials in some counties with outbreaks – including Cleveland, Stokes and Iredell – did not respond to questions from reporters about their disclosure policies by the time of publication.
Northampton directed a reporter's inquiry to the county attorney.
Davidson County’s health department is also not publicly identifying nursing homes that have reported outbreaks.
Linda Howard, at Alston Brook in Lexington, said she would not release information publicly and would not say whether that location had a positive COVID-19 case.
Several others authorized to speak with the media for other facilities in Davidson County said they would publicly disclose if there were an outbreak. Other nursing homes in Davidson County did not respond.
Polk County Health and Human Services announced an outbreak at White Oak Manor of Tryon's long-term care facility on Wednesday. The agency's news release says the positive cases were related to infections of staff members. Residents so far have tested negative, said Health and Human Services Director Joshua Kennedy.
“Ultimately, this is something we – both the agency and our partners too – have been preparing for and we hope that with increased efforts we will continue to prevent further spread to residents," Kennedy said in the news release.
A call for increased transparency
In a letter to Cooper Thursday afternoon, AARP North Carolina urged state leaders to release the names of nursing homes, assisted living communities and other residential care facilities with outbreaks.
"This transparency is critical for public health and the health and wellbeing of the residents and staff of these facilities," Mike Olender, state director of AARP North Carolina wrote in the letter. "Moreover, residents and family members deserve to have this information for their own health decisions and as they consider possible next steps and interventions for their loved ones."
Releasing that information, the advocacy group argues, wouldn't violate federal privacy laws protecting patient information.
“It is appropriate and right to also release the name of the facility so that the residents of that facility, the staff that works at that facility and the loved ones of the residents in those facilities can know what’s going on and understand the issue and take action if they feel action is needed,” said Lisa Riegel, AARP North Carolina’s manager of advocacy and livable communities. “It protects their health and the public health.”
Also on Thursday, lawyers for a coalition of 19 media outlets — including the members of this reporting collaborative — challenged DHHS’ continued refusal to release information about COVID-19 outbreaks at nursing homes in the state.
In a letter to the agency’s top lawyer, attorneys Amanda Martin and Mike Tadych said the North Carolina Public Records Act requires information in the possession of state and county health departments about a COVID-19 outbreak to be released to the public.
“We and our clients are at a complete loss to understand, either factually or legally, the statement that identifying facilities identifies individuals,” their letter said.
Martin and Tadych also challenged DHHS’ assertion that releasing the information could lead to compromising the privacy of individuals’ health information, pointing out that there is nothing in the federal health privacy law that would prevent disclosure of anonymized information about the outbreak of a communicable disease.
“The information we have requested does not implicate individually identifiable health information, and North Carolina’s law therefore compels its disclosure upon request,” Martin and Tadych wrote.
Federal government, other states moving towards more transparency
The federal Centers for Medicare and Medicaid Services issued new rules Sunday requiring nursing homes to begin reporting that information to the Centers for Disease Control and Prevention as well. Separately, the new measure also requires facilities to directly notify residents and family members within 12 hours of a positive case.
“I think transparency is very important because it holds people accountable,” Seema Verma, administrator of the Centers for Medicare and Medicaid Services, said of the new requirements.
The new rules don’t include any requirement for federal, state or local health officials to disclose those outbreaks to the public. But Verma said COVID-19 data from nursing homes across the country will be available to the public online in the next few weeks.
In the state's daily coronavirus briefings, reporters have repeatedly asked both Cooper and Cohen why the state won't release the names of facilities with outbreaks. DHHS officials have argued disclosing those locations, especially where the number of patients is small, would reveal confidential health information.
"We are always trying to strike a balance between protecting patient privacy and sharing information in order to protect public health," Cohen said in response to a reporter's question at a briefing Wednesday. "Where we, as well as many other states, have struck that balance is to provide the county in which those outbreaks or those nursing homes are located."
By contrast, Georgia officials have since early April provided the names of dozens of nursing homes and other facilities with coronavirus outbreaks.
More states appear to be following suit.
Until last weekend, Florida officials had taken a similar tack to North Carolina, keeping the names of elder care facilities with positive cases secret. But Gov. Ron DeSantis reversed course Saturday -- facing pressure from advocacy groups and a media coalition threatening a lawsuit -- ordering state health officials to release the names of more than 300 elder care facilities with confirmed COVID-19 cases.
In Illinois, state officials began releasing details on cases and deaths for the first time Sunday.
This story was jointly reported and edited by Kate Martin and Frank Taylor, of Carolina Public Press; Gavin Off, of The Charlotte Observer; Lucille Sherman and Jordan Schrader, of The News & Observer; Nick Ochsner, of WBTV; Emily Featherston, of WECT; and Tyler Dukes of WRAL.