Who’s dying of coronavirus in Mecklenburg County? Officials are saying little

Fifteen people in the past two weeks have died after being diagnosed with coronavirus in Mecklenburg County, the most in the state.

But the public knows little about them or their deaths, including specifics of underlying health conditions, how long they were sick, or even if the doctors treating them knew their patient had COVID-19.

Officials have said that in general, those with chronic conditions — including respiratory illnesses, diabetes and hypertension — are “more likely to experience severe complications and death due to COVID-19,” according to a Mecklenburg news release on Monday. And adults who are 60 or older are four times more likely to be hospitalized, officials have said.

It’s also unknown where in Mecklenburg the victims lived. County officials also refuse to say where a reported four nursing home outbreaks are located and haven’t said whether any nursing home resident has died.

County officials say they don’t plan to release more information, citing patient confidentiality law. But open-government advocates say that demographic data wouldn’t present a privacy violation.

”A (patient confidentiality) problem is raised when you take those potentially identifying pieces of information and use them to create a patient profile,” said Brooks Fuller, the director of the North Carolina Open Government Coalition.

“It’s not caused by general demographic information to show the virus may be affecting different swaths of our population.”

Mecklenburg reported its first death from COVID-19 on March 29. The county reported three additional deaths late Monday, bringing the total to 15.

Initially, the Mecklenburg County health department would say only whether the person who died had an underlying health issue that exacerbated coronavirus symptoms. Sometimes, officials would release the person’s age or estimated age.

But it wasn’t until 10 people locally had died that Mecklenburg County officials began letting some other basic demographics trickle out: sex, race and hospitalization status.

The information shows the first 10 people who died were all 60 years old or older with underlying chronic health issues and two-thirds were male — figures mostly in line with state data released on deaths across North Carolina. Almost all of those individuals were hospitalized, the county said.

Half of those who died in Mecklenburg were non-Hispanic black — signaling “persisting disparities” that Mecklenburg officials attributed Friday to issues such as poor access to health care, “driving inequities in illness and death related to COVID-19 in our community and many communities nationwide.”

Those racial disparities came under scrutiny two weeks ago, as Q City Metro and the Charlotte Observer reported black residents were disproportionately impacted by the number of positive coronavirus cases. Shortly after, county leaders began pursuing more community-focused outreach through black churches and invited black pastors to a recent press briefing.

Statewide, black residents account for 38% of all deaths, according to the Department of Health and Human Services. But black residents make up only 22% of North Carolina’s population, according to Census estimates.

The Observer has asked state and local officials to release more details about the people who have died. The requests don’t include a person’s name or other personally-identifying information. Still, officials have refused to give more information, claiming a federal medical privacy law precludes the release.

The newly-released data on ages, sex and race provides some additional context to the human toll of COVID-19 in the community. But could more details be released?

Open-government experts argue that HIPAA, formally known as the Health Insurance Portability and Accountability Act, is not meant to be a “catch-all” for protecting medical records. That’s especially true, experts say, when heightened transparency could help both policymakers and everyday citizens understand which communities are most vulnerable during this pandemic.

”HIPAA is one of those privacy rules that is often overused to withhold information that should be public,” said Jonathan Jones, a Durham attorney who specializes in public records and open-meetings laws. “Often, government agencies are overly cautious. I firmly believe more information is good in a crisis.”

Local health departments must ensure patients are “de-identified” before sharing medical records typically guarded under HIPAA. That includes scrubbing an individual’s name, date of birth, hospital admission date, Social Security number and health plan details, among other facts easily linked to a patient.

It’s difficult for health officials to juggle the public’s right to know more about the coronavirus while complying with HIPAA constraints, which can muddle the full scope of the coronavirus outbreak, health experts say.

‘Naturally protective’

It’s reasonable for North Carolina health officials to worry they could inadvertently identify a victim of the coronavirus and trigger a HIPAA violation, said Jill Moore, an associate professor at the UNC School of Government who has written extensively about public health law.

Even under ordinary circumstances, it might be challenging for health departments to comply with HIPAA’s de-identification standards, Moore said.

”Public health departments do have a duty to protect the confidentiality of individuals, as well as a duty to keep the public informed,” she said. “It’s a difficult posture.”

Still, HIPAA doesn’t outline specific conditions — for example, reaching a high volume of fatalities — before health organizations are allowed to unveil more robust patient information.

“I don’t have a good sense of what the threshold is, or if there will be a threshold,” Mecklenburg County Commissioner Susan Harden said of local deaths. “If there’s any way you could tie it back to a person, I think people are naturally protective of that.”

Harden had recently asked Mecklenburg Public Health Director Gibbie Harris and County Manager Dena Diorio to provide demographic breakdowns of residents who died of COVID-19, been tested for the virus, or were hospitalized by age, gender, and race or ethnicity.

Before Mecklenburg disclosed more information, the state DHHS had already provided an online dashboard of coronavirus cases, incorporating racial data for those who died. As of Sunday morning, DHHS had reported only one person of Asian descent in North Carolina had died of the coronavirus — prompting a potential concern over anonymity.

George Dunlap, chairman of the Mecklenburg County commissioners, said Harden’s request could be too intrusive. Dunlap said “no one” wants to be labeled as “a carrier of the virus” — though Harris has repeatedly told residents to assume anyone they encounter is COVID-19 positive.

“To the extent possible, people need to deal with their issues in private,” Dunlap told the Observer. “What’s the benefit of knowing? I tend to disagree with the (idea of) the more information, the better. I guess if I knew better the value of that data shared with the public, then I would have a different response.”

Racial disparity

The reverberating implications of the local outbreak came into clear focus on March 22, when Mecklenburg began divulging demographics surrounding residents infected with COVID-19. Data points included age, gender, race and ethnicity, and ZIP code of residence.

In a critical revelation, the information showed African-Americans living in Mecklenburg were disproportionately impacted by the coronavirus, the Observer and Q City Metro reported.

Black residents comprised 50% of the 869 confirmed COVID-19 cases locally through April 9, the latest information available. By comparison, they make up only 33% of Mecklenburg County’s population, according to Census estimates.

County Commissioner Susan Rodriguez-McDowell said it is time to release more socioeconomic information on Mecklenburg residents testing positive for the coronavirus.

“We see there are disparities, but that’s not OK. We have to do everything we can to prevent that from occurring,” Rodriguez-McDowell said. “It’s life and death — that feels really important.”

Mecklenburg’s initial demographic disclosure last month came two days after the Observer reported county officials were shielding more information than legally necessary — and potentially missing opportunities to raise public awareness about the illness.

“The data makes the racial disparity visible to communities that don’t always have to deal with that disparity,” Harden said. “ If we provide outreach and call attention to this disparity, it could change. That’s the hope.”

The April 9 data for infected patients, released Friday evening, shows white residents made up 31.1% of cases, with Hispanics at 10.8%, Asians at 2.8%, and Alaskan Natives or American Indians at less than 1%. In 4.8% of cases, race or ethnicity was not reported, officials said.

Mecklenburg County Commissioner Vilma Leake said demographic insights should have been available from the “very beginning.”

“Where are we testing and where are the ZIP codes? I have a major concern when we talk about supporting those less fortunate and we’re not doing it,” Leake said. “We’re doing nothing to impact the weakest of the weak in Mecklenburg County.”

Charlotte City Council member Braxton Winston said the data collected so far during the pandemic is clear enough.

Additional analysis, Winston said, will only further underscore the systemic racism and poverty experienced within Mecklenburg’s marginalized communities.

”We already know where the problems are — we know why they occur,” Winston said. “People need places to go home to that are safe and secure. That is the number one prescription here.”

This story was originally published April 13, 2020 at 2:45 PM.