For Emily Acritelli, it started with a dry cough then quickly progressed to fever.
This was early last week, before Maine had any confirmed coronavirus cases, before toilet paper hoarding set in and before widespread school closures.
The 24-year-old Portland resident called her doctor but was told it was likely the flu and she should stay at home and rest. She called again three days later to ask about a test and was told she didn’t fit the criteria.
After her symptoms went downhill Monday, Acritelli finally persuaded her doctor to test her, nearly a week after the symptoms first showed up. She went in Monday afternoon and was told the results would arrive by Tuesday.
Although doctors across the state have the authority to test patients without permission from the Maine Center for Disease Control and Prevention, they may be exercising caution out of concern that testing supplies will run out. That has led to frustration, leaving some people concerned about potentially spreading the virus unknowingly.
“My concern is finding out whether or not I test positive so I can notify my school and workplaces so they can take the necessary precautions and steps forward,” said Acritelli, a student at the University of Maine School of Law.
“My concern is not infecting the rest of the public with this virus so the spread will stop and not continue to grow worse or to people that may not recover from this virus. And lastly, my concern is with doctor’s offices telling people to wait out the symptoms for about seven to 10 days and that they’ll then be fine to go out in public, thereby potentially infecting the rest of population without even knowing.”
Any doctor can conduct a test using what’s sometimes called a general viral culture medium. It includes two swabs: one from the back of the throat through the mouth, the other through the nose. The swabs are sealed and then sent to one of two testing labs: the Maine CDC lab in Augusta and a lab in Scarborough run by MaineHealth. It can take between 12 hours and two or three days to get results back because the cultures are transported via courier.
Maine CDC Director Dr. Nirah Shav said Monday that there were 17 confirmed or likely cases in Maine, up from two on Friday. He also reported 764 negative tests, up from fewer than 100 Friday. As of Monday, the CDC had just one test kit capable of testing about 1,000 patients but more were on the way, he said.
Shah also tried to clear up the confusion about who decides when to test.
“Right now in Maine, the final decision, the arbiter of who should be tested, is the physician herself or himself,” Shah said. “Maine CDC places a great amount of trust in the professional judgment of physicians. If a physician in her determination decides that a patient needs to be tested, even if their contact was fleeting, the Maine CDC laboratory will test them.”
But that doesn’t match the experience for everyone, in part because not all doctors or urgent care centers have adequate testing supplies or because not everyone is following the same protocol about who to test.
In addition to Acritelli, more than a dozen people have contacted the Press Herald in the last few days to share frustrating experiences. Many did not wish to have their name published, but their stories had similarities. Doctors or walk-in clinics are not necessarily testing patients unless they have traveled to an affected area or encountered someone who has, even though federal guidelines on testing have changed several times during the outbreak.
Samar Post Jamali, a 40-year-old nurse practitioner from Portland, said she has spent about 20 hours over the past two weeks on airplanes or in airports. She also has had a persistent sore throat, dry cough and elevated temperature. She has reached out to doctor’s office multiple times about getting tested and also tried to set up an appointment at a drive-through testing site but was denied.
“I understand I don’t meet the standards needed for testing yet,” she said. “However, I am hoping testing becomes more accessible since the data points to an under-representation of infected individuals.”
Shah said current federal CDC’s guidelines for testing depend on the closeness and duration of contact with an individual who has tested positive. Those federal guidelines recommend offering testing to individuals who have developed symptoms and have been within three meters, or about 10 feet, of an infected person for at least 15 minutes.
“So someone who casually came into contact – you pass someone in the hallway, for example – according to the U.S. CDC, not having symptoms and having had casual contact does not qualify as someone who should be tested,” Shah said. He stressed that those are just guidelines and that the Maine CDC continues to update physicians multiple times a week.
Ben Bernard of Portland had a Jekyll-and-Hyde experience in his family that demonstrates how much things have shifted in recent weeks.
In late February, his daughter cut short her semester abroad in Italy, which has become the European epicenter of the outbreak. He and his wife made plans to bring her home quickly. When she flew into JFK Airport in New York, she wasn’t even screened.
“As soon as she was safely in the car, my wife called the Maine CDC for advice, and I called the federal CDC. Their advice? Unless she’s coming from China and has symptoms, she does not need to be tested or quarantined,” Bernard said.
Once they were home, Bernard said they ignored that advice and self-quarantined. His wife even stayed with neighbors. He worked from home and their daughter continued her classes online.
When he tried to see about getting her tested, though, he kept getting denied. Although she had been in a virus hotspot, she did not have symptoms.
“This virus clearly can be spread by asymptomatic people, so we need to be testing much more broadly,” he said.
Her two-week self-quarantine ended last Wednesday, just as the first cases were being confirmed in Maine.
On Friday, Bernard woke up with symptoms and inquired about testing himself. He emailed his primary care doctor at 10 a.m. and a got a call back by 11:30. An appointment was set for 1:30 that afternoon.
“I arrived, was tested, and returned home well before 2 p.m.,” he said. “I got the good news call by 8:30 (Saturday) morning.”
“I am very thankful that my (doctor) took the situation seriously and can’t help imagine how much less excruciating the last several days would have been if testing had been available for my daughter earlier.”
Staff Writer Kevin Miller contributed to this story
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