County protocols prevent identifying rural communities with confirmed cases of the virus

April 4, 2020 — The Siuslaw region may have had its first confirmed case of the novel coronavirus COVID-19.

The patient, a woman in her 50s, returned home this week after being hospitalized with the illness, the first symptoms of which began in late February.

Lane County Public Health (LCPH) announced Thursday that the woman lives in a “rural area outside of Eugene/Springfield,” and Siuslaw News has received independent reports that the patient does live in the Florence area of the Siuslaw region.

However, Lane County will neither confirm nor deny whether the patient lives in Florence.

This is due to a rule implemented by the county that does not allow LCPH representatives to report residency of any cases living outside of the Eugene-Springfield area. Instead, all Lane County cities outside that area are lumped into the designation “outside Eugene/Springfield” or “Rural Lane County.”

Because of current LCPH protocol, Florence and those living in the Siuslaw region will not have official confirmation of any cases of COVID-19 despite evidence that there is at least one confirmed case already.

LCPH says the reason for the current protocol is patient privacy and safety. Recent examples of discriminatory actions against patients with the virus have made Lane County officials wary of pinpointing cases in smaller communities. However, there are concerns the not identifying communities outside of Eugene/Springfield with confirmed cases of the virus could have a host of negative effects in the fight against the spread of COVID-19. By withholding information, regions such as the Siuslaw are hampered in their abilities to properly prepare for and respond to a potential outbreak.

The result could be a spike in local cases due to a false sense of security, potentially encouraging people to break stay-at-home orders. At the opposite end of the spectrum, confusion or assumption regarding rumors of the virus within small communities could be made worse by LCPH not identifying where confirmed cases of COVID-19 are located. This could have the opposite effect of reducing discriminatory actions if those suspected of having the virus are identified through unofficial sources on social media.

LCPH Public Information Officer Jason Davis spoke with the Siuslaw News about the possible Florence-area patient, the rules regarding disclosure, why they were implemented and the effects the current protocols could have on flattening the curve of the spread.

Siuslaw’s first “confirmed” case

On April 2, LCPH announced that a woman in her 50s had been officially diagnosed with COVID-19. She had been hospitalized but was now recovering at home.

Her symptoms first began on Feb. 23.

“There was a cough and then the cough progressed into a shortness of breath,” Davis told the Siuslaw News after Lane County’s press briefing on Thursday.

At the beginning, the symptoms mirrored underlying health conditions the woman had, and there were no symptoms that were often associated with COVID-19, such as fever.

The woman went untested for 25 days, until the symptoms came to a point that testing was deemed necessary on March 18. It is unknown if or when she went into isolation during that period.

“This is something we’re seeing more and more,” Davis said. “People who feel general lethargy, or headaches or coughs, it’s hard for them to understand the first symptoms of COVID. Since the virus can take a long time to show those advanced symptoms, it makes it problematic in identifying those with the initial onset.”

And despite having the virus for over a month, the woman is still in recovery.

“This individual is being asked to stay home because they are still exhibiting some of those symptoms,” Davis said. “That is being done in an abundance of caution.”

The one thing that Davis could not tell Siuslaw News is where the woman was actually residing. All he could say is she lived in “rural Lane County.”

Siuslaw News became aware of the case this past Wednesday, after a local healthcare worker, who asked to remain anonymous, said they knew of a local woman in her 50s who had been confirmed to have COVID-19 following testing at PeaceHealth Sacred Heart at RiverBend in Eugene. That would make her the first confirmed case of the virus in the Florence area.

Siuslaw News had been receiving multiple reports of possible COVID-19 infections throughout the past week, including one individual who stated that she and seven friends were convinced they had contracted the virus earlier in March but had since recovered. However, none of the individuals had been tested for COVID-19 and therefore have not been officially confirmed.

Rumors and questions were also buzzing on social media.

Siuslaw News contacted Davis, who stated that there were no confirmed cases in the Siuslaw region at that time, “but if there was a case, family would be notified first, then the city in charge and, soon after, the information would be released via a flash alert and a press conference.”

However, during the live LCPH press briefing this past Thursday, authorities confirmed two new cases in Lane County, one of which was “a female in her 50s who lives in rural Lane County and was hospitalized but is now at home…”

A source familiar with LCPH told the Siuslaw News, “The county is not reporting residency of patients living outside of the Eugene-Springfield area. They are simply reported as being from ‘elsewhere in Lane County.’”

Siuslaw News emailed LCPH for a response, requesting that the agency either confirm or deny the woman in her 50s lives in the Florence area of the Siuslaw region. At that point, Davis contacted Siuslaw News for an in-depth interview on the reasoning behind Lane County’s decision to withhold residency information from rural communities with confirmed cases of COVID-19.

Rural versus urban

Questions on how the state should report cases was discussed early on in the crisis, according to Davis, with information coming from the Centers for Disease Control in Atlanta, Ga.

“Oregon took up this question early on in light of our own unique situation here — except for a couple of dense metropolitan areas, we are largely rural, small communities,” Davis said.

Two arguments came out for and against naming communities with COVID-19.

“There were some people saying, ‘Yes, I think in our county it is fine to release individual information. We think the ramifications of doing so will be manageable, and it’s not a violation of HIPPA,” Davis said, referring to the law barring the release of private health information to the public.

However, others felt that if smaller, rural cities were named, patients with COVID-19 would be easily identified and potentially targeted — as has happened with past outbreaks such as HIV, SARS and Ebola.

“I think what has colored the public health reasoning behind this are those isolated and extreme incidences where people have really gone above and beyond to make an individual’s life miserable, even taking potentially harmful physical actions against people [with a disease],” Davis said.

But Davis also pointed out that stigmatization is not the norm.

“I think the general public is not interested in shaming people,” he said. “I don’t think the public is interested in condemning people for getting sick, especially since we understand how contagious this illness is. It’s no fault of the individual.”

The state was not able to come to an agreement on whether to release location information of confirmed COVID-19 cases, so it left the decision up to individual counties, according to Davis.

“In Lane County, the initial assessment was leaning on a national public health model of keeping patient privacy intact,” he added.

The reasoning being that if a woman in her 50s in the Eugene/Springfield area were to contract the virus, it would be difficult to pinpoint exactly who she was because of the large population of the two cities.

“However, in a small community like Swisshome or Deadwood, where there might be only three people in their 50s overall, it would be pretty easy to narrow down,” Davis said.

While LCPH has a duty to protect HIPPA law, “It’s also about respecting individual civil liberties, rights and medical privacy,” he said. “It’s about trying to make sure folks in communities in Lane County feel confident that they can have communications with Lane County Public Health about personal health information and it won’t be made public.”

Also playing into the decision was the fact that Oregon was already putting in place strict social distancing guidelines and treating community spread of COVID-19 as a reality.

“It is already in your community, and it’s already spreading around. And there likely will be cases — and some of those cases will never be identified,” Davis said.

So, the county made the decision to only report two areas: Eugene/Springfield would get one designation, and the rest of Lane County would be considered “outside” or “rural.”

Interconnected rumors

The approximately 4,200 miles that constitutes “rural” in Lane County has hundreds of communities, many of which have sizable populations. This includes Cottage Grove (pop. 10,169), Florence (pop. 8,947), Junction City (Pop. 6,101), Creswell (5,375), Veneta (pop. 5,016) and Oakridge (pop. 3,294). Then there are the hundreds of small communities in the county that connect to these cities.

For example, the Siuslaw region includes Florence, Dunes City, Mapleton, Swisshome, Tide and unincorporated areas that make up an estimated 16,000 residents in total.

The communities are interconnected, sharing the same medical care at PeaceHealth Peace Harbor, as well as the same shopping destinations and demographics. Based on conversations already taking place in communities throughout the Siuslaw region, most have at least one individual who thinks they may have COVID-19 or thinks a community member has it.

Siuslaw News posed a scenario-based question to Davis: If LCPH statements only identify confirmed cases as being in “rural Lane County,” then every community not within the Eugene/Springfield region is likely to assume they are the latest location with the virus. And if every community outside of the Eugene/Springfield area thinks it has the latest COVID-19 case, it could create ongoing county-wide confusion, with communities unable to confirm the facts.

“I think you’re absolutely right in your assessment,” Davis said. “I think there are dangers to that. I unfortunately don’t have a really clear answer. The weight of the decision so far has really been focused on patient privacy rather than the acknowledgement of the geographic differences of our county.”

Davis stated that he has seen people self-outing online because of the rumors. But so far, these examples are from the Eugene/Springfield area. In that case, Lane County confirmed that there was a case in the region. However, if someone from Florence were to contract the disease and decide to identify themselves online as a public service, they could not point to Lane County as an official reference point to distinguish it from being just another rumor.

And neither can local news sources.

“That is an unfortunate casualty given the nature of information sharing,” Davis said.

The dangers of the rumor mill are not limited to privacy concerns. Lane County’s refusal to share information could also make the spread of the disease worse while weakening community efforts to effectively combat the disease.

In the past week, The Oregonian published two articles regarding the state’s response to the pandemic. Quoting a recent study by the Oregon Health Authority (OHA), it was stated there was strong possibility that the social distancing restrictions were working, and that Oregon was possibly close to flattening the curve low enough to keep hospitals from being overloaded.

But the core data of these studies is limited only to people ill enough to warrant a test.

That leaves larger questions on how the virus affects the population — and what is needed to begin the process of going back to daily life — uncertain at best.

The reason? The inability to do wide testing, said Davis.

“There just aren’t enough testing resources for us to be able to use testing as a weapon against this outbreak in an effective manner,” Davis said. “Public Health would love to see a mass testing exercise in Florence, where we could do drive-thru testing on 4,000 people that might be symptomatic. We would be able to identify which ones actually do have COVID and make clear and strong recommendations for those individuals. By doing that, we could significantly slow the spread of the disease in the community. At least then we can equip the community with a baseline level of how COVID is moving through.”

However, given the fact that only a limited number of people are being tested right now, that’s not happening.

“There are people who are probably have COVID. They are being told to simply stay home, which is the general direction for everybody right now, but especially for individuals who are symptomatic.”

Siuslaw News has spoken with non-tested individuals who believe they had COVID-19, recovered and are now willing to break self-quarantine.

“I would love to get the message out there that the level of immunity — and how people experience immunity from COVID — is still a very much unknown verdict,” Davis said. “I think we’re basing our assumptions on MERS and SARS. This data is not directly relevant. I would never want to assume that I am not going to share a disease with the community merely based on these very loose understandings of this virus.”

Problems could also arise for community responders such as West Lane Emergency Operations Group which, without the ability to tell the community whether or not there are cases in the region, the ability to mobilize the community in the event of a spike in infection could be made more difficult.

The need for transparency

“I happen to live in a smaller, rural community myself,” Davis said. “I hear concerns from the people I live near. I absolutely know the fear and anxiety of being kept in the dark. That’s the last thing in the world in terms of outcomes that we want to see happen.”

According to Davis, LCPH is made up of doctors who have devoted their lives to promote the health of a community.

“It just so happens, in order to stay funded, we have to remain under the umbrella of government. Not saying government is bad, but we have a different mindset and a different composition than other government entities. It’s very pro-social and pro-health, and not nearly as focused on enforcement or other elements that have fostered a level of distrust in some areas of Lane County,” he said.

LCPH is attempting to expand the information it is allowed to give to help guide communities.

“We’re pushing on our data folks to try and combine and consolidate information to be able to provide information to our smaller, rural communities,” Davis said.

And he also believes that these issues can be worked out.

“There clearly is a way,” Davis said. “I think the fragmented nature of public health policy implemented at local levels is both a positive for public health — because it allows for flexibility to make those decisions at a local level — but also can be an impediment. During a time of emergency, strong leadership and clear information is imperative.”

But to do that, there has to be broader conversation.

“I think the other piece we have to address is that these concerns are being heard, that our officials are listening and not turning a deaf ear to the needs of our rural communities,” said Davis. “While I’m not a decision-maker on many fronts, I think we need to bring everybody into the conversation and really help people understand how decisions are made — even if we have to make hard decisions. We have to bring people in on the decision-making process and, at the very least, help them understand how those decisions are being made and how to be a part of that process.”