Crystal Burke started experiencing symptoms on March 15, two days after returning from Boston. Her doctor declared her presumptive positive for COVID-19 and she was tested on March 18, in part because of her prior respiratory problems.

Crystal Burke of Hancock was declared presumptive positive for COVID-19 in mid-March and tested. The test didn’t come back until April 7 and was negative, but based on her symptoms, Burke is convinced it was a false negative. She wants to know for sure because she fears her 9-year-old daughter, Bethany Burke, who has Down syndrome, would be at high risk. Photo courtesy of the Burke family

Burke’s test was sent to the U.S. Centers for Disease Control and Prevention lab in Atlanta and she was told to wait. She wasn’t a health care worker and she wasn’t elderly, so it might be a week or more. This was before Maine started processing its own tests.

As she waited, quarantined at home in the town of Hancock, her symptoms worsened. High fever. Fatigue. Trouble breathing. Her husband and three daughters, ages 3, 5 and 9, developed symptoms, too, but they were mild.

Nearly three weeks passed before her results came back. They were negative.

Burke didn’t know what to make of them. She believes that because she was tested so early, because she uses a steroid inhaler and because her results sat for so long, maybe the test wasn’t accurate.

“But I’d like to know because if I didn’t have it, I’m at pretty high risk,” she said.

Since the coronavirus outbreak began spreading in the United States in March, public health experts have sounded a familiar refrain: The number of confirmed cases represents the tip of the iceberg. But trying to measure the size of that iceberg is a daunting task.

For one, states don’t have the ability to conduct widespread testing. Maine, like many states, has focused its testing on health care workers and people at high risk, such as those who live in long-term care facilities.

Many doctors have told patients who exhibit the symptoms of COVID-19 to just stay home. Ericka Dodge Katz of Brunswick went to the emergency department at Maine Medical Center on March 30 after she had trouble breathing. She had experienced symptoms for several days by then and her doctor said she was presumptive positive, even though she was never tested. She described the illness as “the scariest health experience in my life.”

There also have been an unknown number silent carriers of the virus who don’t show any symptoms and wouldn’t even think to get tested. They are one of the biggest reasons for imposing strict stay-at-home measures – because asymptomatic people can spread the disease unknowingly and exponentially. Dr. Ashish Jha, director of the Harvard Global Health Institute, told CNN on Tuesday that the reason the American economy is shutdown is because of inadequate testing.

Under better circumstances, states would add sentinel, or random, testing as a way to more accurately capture the virus’ spread and quash future outbreaks.

And then there are cases like Burke’s – potential false negatives. Some estimates put the false negative rate as high as 20 percent. That’s why most experts have advised that even people who test negative should act as though they have the disease.

Dr. Nirav D. Shah, director of the Maine CDC, said, “In any outbreak situation, we’re only seeing a part of the iceberg at any one time. We need to account for that part of the iceberg we might not see but we know is there.” Derek Davis/Staff Photographer

Dr. Nirav Shah, director of the Maine Center for Disease Control and Prevention, said last week that the state has begun tracking a new category of cases – probable cases – that will provide a more accurate (but still not complete) picture. Last Friday, just two of the state’s 965 cases were probable.

“In the interest in thinking ahead, because we now have this category; there will be more cases … more people who previously weren’t counted,” Shah said.

By Wednesday, 27 of the 1,056 cases were probable.

Shah explained last week that the state can identify probable cases through contact tracing. CDC investigators contact those who have tested positive and ask about people with whom they have come into contact. If a person’s spouse develops symptoms consistent with COVID-19, their doctor might decide not to do a test, but the CDC can conclude that the person had the virus.

“In any outbreak situation,” Shah said this week, “we’re only seeing a part of the iceberg at any one time. We need to account for that part of the iceberg we might not see but we know is there.”

Maine CDC spokesman Robert Long said medical providers can report probable cases to Maine CDC but it has not been common. If it does happen, the CDC would conduct its own contact tracing.

Each state is now using the same language to determine probable cases, so there is consistency state to state. In simple terms, probable cases are people who are symptomatic with a known exposure to COVID-19 and no other likely diagnosis but have not been confirmed with a positive test.

The U.S. CDC began including probable cases and deaths in its data on April 14.

However, although the U.S. CDC recommends that states share probable cases, some states are not. Those that are have reported larger numbers. New York City last week revised its numbers to include probable cases and deaths. The numbers spiked dramatically, confirming what experts have been saying for a while. It also led to some conspiracy-minded accusations that states are padding their numbers.

Dr. Su-Anne M. Hammond, primary care medical director for Northern Light Mercy Hospital, said doctors there have been following the CDC’s strict guidelines for testing, which means there are many patients who have the disease but have not been tested.

“A lot of people seemed to understand our testing limitations but there are some who really want answers,” Hammond said. “What we tell them is: If I test you and it’s positive, that’s not going to change what we’re going to tell you to do.’ So we ask them to trust our clinical judgment.”

Hammond said people with symptoms consistent with COVID-19 are asked to stay home and isolate from family. Doctors can then monitor them closely with telehealth.

“There is really no way to estimate how many might be probable cases,” Hammond said.

For Katz, a probable case, and Burke, a possible one, both followed recommendations to self-quarantine to limit the chance of spreading the disease.

Burke said in an ideal world, she’d be approved for an antibody test, which allows testing people even after they have recovered.

Maine Department of Health and Human Services Commissioner Jeanne Lambrew said this week that Maine is exploring its options for adding antibody tests, but that the accuracy and reliability of such tests is not yet where it needs to be. Antibody tests do not currently meet the CDC definition for a confirmed case but would denote a probable case.

Hammond agreed that antibody testing will be crucial going forward, but said it’s “not as close as people think.”
“That’s hard for people because instant gratification is a big part of our world,” she said.

Burke has one other reason to be worried.

Her oldest daughter has Down syndrome. Although there is no evidence that people with Down syndrome are at greater risk if they contract COVID-19, they may be more at risk generally from infections, especially respiratory infections.

“She is the ray of sunshine that walks into the room,” Burke said. “I know society doesn’t give money to that, but she has value.”

If she has indeed recovered, Burke said she’d be glad to offer her services. She works in biotech and has a background in veterinary care.

“If I did have it and I have some immunity, I’d be happy to go work in front line,” she said. “But I need to know because I can’t risk my family.”

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