Why you can’t know if COVID-19 is in your Delaware town

The News Journal | by Meredith Newman

As the number of confirmed coronavirus cases in Delaware continues to climb and the first deaths have been reported, many residents are looking for answers.

“Could Delaware please provide more detailed info of what towns, within each county, that have confirmed cases of the virus?” asked Milton resident Cindy Black. “I’d like to know if any cases are in my town?

“Maybe this info could help flatten the curve?” she said.

Others are asking: How many tests have been conducted? Does the state have enough ventilators?

Health officials say they are constrained by the Health Insurance Portability and Accountability Act, and because of this, cannot provide any additional details of specific cases — including towns — because it could lead to a person being identified.

The state will also not say how many ventilators, masks and other protective gear Delaware hospitals have available or will need to have in the future. This comes as several states, including New York and Washington, are desperately trying to find ventilators to save the lives of the sickest.

Delaware residents are not alone in this lack of knowledge, other state health departments have provided similar information, or lack there of.

Some public health experts and elected officials believe more information is needed in order for Delawareans to truly grasp the magnitude of this pandemic and act in public interest.

“I trust that if you see a place or a business or a town or a hotspot, you are more likely to isolate yourself,” said Newark state Rep. John Kowalko. “It took me a while to appreciate that you have to stay in. It really is distressing and it is also necessary.

“The more people take it seriously,” he said, “the more likely we are to face this hidden enemy.”

What can the state tell us?

Almost half of the confirmed COVID-19 cases in Delaware are among people between ages of 18 to 49, state officials said this week.

Forty people between 50 and 64 have the virus, while 46 people 65 years and older have been confirmed, as of March 26. Three children under the age of 17 contracted it as well.

The youngest resident with the virus is a 1-year-old, while the oldest is 90.

As of noon March 27, there were 163 confirmed cases of coronavirus in Delaware — 105 in New Castle County, 21 in Kent County and 37 in Sussex County.

More women have coronavirus than men. Fifteen people have been hospitalized in Delaware, while two other residents were hospitalized out of state, officials said.

In the two weeks since the first coronavirus case was announced, the state has been providing regular updates. This often includes a breakdown by county, gender, a general age range and the number of people who are hospitalized and in critical condition.

In the past week, the state has updated its COVID-19 website about twice a day, and then sent a media advisory near the end of each work day. State officials have also held press conferences and virtual town halls.

When Delaware announced its first case on March 11, health officials revealed the man was over the age of 50, lived in New Castle County and was connected to the University of Delaware.

The university later announced the man was a faculty member.

The next couple of confirmed cases included an age range, gender, and county. And, when applicable, identified the patients as members of the University of Delaware community.

But as the number of cases grew, the health department stopped providing information for each case, instead offering general statistics for the total confirmed cases in Delaware.

For a period of time, the state also provided information about the number of people who were under investigation and tests that were pending. When commercial labs began testing for the coronavirus in Delaware, the state then started to only announce positive cases.

Dr. Karyl Rattay, the director of the Division of Public Health, said Thursday that the state’s public health lab, as of March 25, has run 639 tests, of which 48 are positive. The rest of the confirmed positive cases have come from commercial labs.

At the Delaware health care facility testing sites, a total of 2,617 samples have been collected as of March 25. This does not include any tests performed in emergency departments, inpatient units or primary care offices, she said

The state does not have the results of many of these samples yet, Rattay said, and it’s unclear how many of these samples are from Delaware residents. The state said it will provide more information about the number of test results in the coming days.

“We are working through some data sharing issues and once we have that information, we plan to be able to share that with you,” she said.

The first Delawarean who to die from coronavirus was a 66-year-old Sussex County man, who had underlying health conditions and was critically ill.

On Thursday, officials said the man had died within the previous 72 hours and had the typical symptoms of COVID-19, including a fever. Their announcement came 18 hours after a 7:30 p.m. press release Wednesday announced four victims had recovered.

During a virtual town hall Friday, Gov. John Carney mentioned the man lived in the Dagsboro-area.

When answering a question on the media call Thursday, one state official briefly mentioned that the man died in a Maryland hospital, but quickly said “out of state hospital.”

When a reporter asked to confirm the man died in Maryland, state officials would not.

What won’t the state tell us?

Due to HIPAA restrictions, state officials say they can’t release any personal information on any individual case, including: name, address, city, underlying health condition, or dates of medical care, including date of death.

This information, health officials say, on its own and combined with other “information in the public space” could lead a person to be identified.

“DPH’s greatest responsibility is to protect the personal health information of every individual in our state,” said Rattay, the director of the Division of Public Health. “And we take that responsibility incredibly seriously.”

Yet, the state routinely releases ages, counties and information about whether a patient had a flu shot or underlying conditions when announcing deaths from influenza.

Specifically, Rattay said the state can’t identify patients’ towns due to HIPAA restricting information for populations less than 20,000.

This applies to many Delaware towns, she said. The areas that exceed this population count are Wilmington, Dover, Newark, Bear and Middletown.

The state was able to reveal the first confirmed case’s connection to the University of Delaware because the community exceeded this number.

Delaware officials have declined to provide specific information about the number of ventilators and other medical supplies currently available to health care workers.

According to the Delaware Healthcare Association, there are a total of 395 intensive care unit beds at Delaware hospitals. A spokeswoman for the organization said it is “not possible to quantify exact numbers regarding our respiratory support equipment.”

Health officials have said the state is talking to hospitals and the Delaware Emergency Management Agency every day, and are monitoring the amount of masks, test kits and other protective gear available.

Hospitals, including some here in Delaware, have been asking for donations.

“Right now, we have what we need in-state,” Rattay said. “But we do have concerns that some of the items have certainly become more difficult to order.”

Gov. John Carney has said hospital capacity has been one of his biggest areas of concern.

During a March 19 interview with The News Journal, Carney said he had received a spreadsheet that day which outlined what the hospitals have. He declined to make that information public.

“We don’t have a lot in terms of a surge capacity,” Carney said. “That’s the biggest fear.”

He said this has been a focus of DEMA and there have been ongoing conversations with the National Guard, specifically about the potential of setting up a facility to handle a surge of cases.

One potential location, he said, is the building that used to house Milford Memorial Hospital.

What do experts say?

Since the first case was confirmed, The News Journal has received dozens of emails, phone calls and Facebook comments, all asking for more information about where the virus is in Delaware.

“How about the number actually tested,” suggested Milford resident Lezlie Eustis, “broken down by age in decades, how many have other underlying health issues, how many live at home, and how many live at a care facility.”

“Are there clusters of cases in specific portions of the state?” asked Rehoboth Beach resident Glen Pruitt. He would also like to see a map identifying the towns where people with COVID reside.

Dr. Mohammad Akhter, who also oversaw Missouri’s and Washington, D.C.’s health department, said he believes there is value in providing community-specific information.

If people knew there were confirmed cases in their town, or zip code, they will likely become more alert and will take the precautions — such as social distancing — to protect themselves, the Delaware resident said.

“You cannot fight an infectious disease without being transparent. Eventually the information will come out,” Akhter said. “There is no infectious disease a health department can win without the help of the people.”

But due to the United States’ privacy laws and Delaware’s small population size, this cannot be done in practice, said Jennifer Horney, the founding director of University of Delaware’s epidemiology program.

“The law and guiding principle is to protect confidentiality,” she said. “This is the problem with small numbers.”

If for example, Horney said, the state released COVID-19 related information about a white, 87-year-old woman from a small Delaware town, it wouldn’t take long for people to figure out who this resident is.

But this isn’t good enough for Kowalko, a state representative, who has been frustrated with the information that has been provided by the state.

While he believes Carney and health secretary Dr. Kara Odom Walker have done a good job addressing the outbreak, he believes Delawareans have a right to know what areas are being hit the worst by this pandemic.

“I think quite frankly the transparency has been horribly lacking,” said Rep. John Kowalko. “I say that to not criticize efforts that are made. I know HIPAA laws are well intended, but … it’s not to be a blanket.”

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