By Wednesday, Wendy Thomas knew testing was the only option.
After 24 hours of watching her daughter with a headache, body ache, fatigue, cough and a fever, the Merrimack resident and New Hampshire state representative could see the next step: she needed a test for the novel coronavirus.
But actually getting that test proved alarmingly difficult.
Since Tuesday morning, Thomas’s 21-year-old daughter had displayed debilitating, flu-like conditions, had taken off work, and had resorted to recovering in her bedroom. She had already visited an urgent care center and been tested negative for Flu A and Flu B. She fit the profile for a test for the new virus.
Yet according to guidelines released the U.S. Centers for Disease Control and Prevention, Thomas was not eligible to receive a test for COVID-19, the respiratory virus sweeping the country. She may have had a laundry list of symptoms. But she did not have evidence of direct contact with an infected person or travel to an infected zone.
The hospital, a major Manchester provider that Thomas requested not be named, refused to give the test at first.
On Thursday morning, after a ca ll to the Department of Health and Human Services, the hospital called to say it had changed its mind and would give the test.
The reason? Thomas’s daughter is a nurse. DHHS’s own guidelines for coronavirus tests allow health care workers to jump in first.
Thomas, her daughter, and the rest of the family are now self-quarantining in their Merrimack home as they await the results of the test.
But the confusing answers Thomas received in 24 hours – and the uphill battle to get the test she needed – are examples of a problem that is shaking the health care industry across the country.
New Hampshire continues to face a drastic shortage in the number of testing kits for the novel coronavirus, according to state figures, and state officials have continued limiting who can receive those tests.
The state had only around 200 to 230 testing kits available as of Friday morning, Department of Health and Human Services Commissioner Lori Shibinette said, hampering officials’ ability to conduct widespread testing. On Friday, Gov. Chris Sununu announced that the state will have around 500 this week.
And for the state-issued kits that do exist, New Hampshire health officials have been largely following guidelines from the Centers for Disease Control and Prevention (CDC) that allow only those with the most severe symptoms to get them, Shibinette said.
On Friday evening, those limitations seemed on the cusp of changing. A deal that passed the U.S. House and has President Donald Trump’s approval should allow people to get access to testing via test kits sent to private laboratories from hospitals at no cost.
State officials Friday released updated guidelines for hospitals recommending when they should test patients using the private labs. And they say that they have occasionally gone beyond the CDC guidelines in recent weeks, giving out testing in certain cases to some who wouldn’t ordinarily get them.
But for weeks, the policy followed by both state officials and hospitals has still limited the ability to get the tests – even when doctors recommended it.
The result: The state has had to turn down requests for testing from patients who have exhibited some symptoms but not all risk factors, Shibinette said.
“We have definitely had providers calling in and saying they have some of the symptoms of COVID but maybe they haven’t had contact with someone,” she said, addressing lawmakers on the Fiscal Committee Friday morning. She was not able release the number of people turned away.
“We have several of those,” she said, when pressed. She said those who had asked for tests but not received them were in self-quarantine anyway.
State epidemiologist Benjamin Chan said at a press conference Friday evening that the state is logging all calls it gets but is not directly tracking who is not receiving a test.
“What I will say though is that anybody that is concerned about their health, especially if they’re having ongoing symptoms, especially if their symptoms are worse, especially if they’re having shortness of breath or any difficulty breathing – they should be in contact with their health care providers and healthcare providers can help reassess the health status of that person,” Chan said.
In the long term, state and federal health officials hope that commercially produced tests will soon be widely available for more people to access via a simple doctor’s note. That will allow New Hampshire residents to sidestep the state DHHS entirely and just go through their health provider.
But those tests are still being produced and are not in widespread use.
The lag in testing ability in the Granite State came even as President Donald Trump and federal officials have made promises to ramp up capacity in recent days, leaning on private laboratories like Quest Diagnostics and LabCorp to increase productions of tests that can be distributed to health care providers.
And it persists as a number of states face sustained outbreaks that have diverted CDC focus and support away from lesser problem states like New Hampshire.
But as public concerns over the novel coronavirus increased in the wake of a spate of national school closures and sports cancellations, the level of testing in New Hampshire prompted pointed questions from lawmakers Friday.
To Sen. Tom Sherman, a Rye Democrat and a practicing gastroenterologist, limiting the testing to CDC guidelines meant that the state has been missing out on a key measurement of the virus: the potential for community transmission.
Because the tests have only been given to people who have symptoms and have been in known contact with people or places where the virus is present, it by default misses anyone who may have received the virus unknowingly, Sherman says.
That means even if the virus has been spreading in New Hampshire to people who haven’t traveled to Italy or other risk areas, the state has not had the tools to track it.
“Those definitions automatically miss community acquisitions,” Sherman said. “You are not able to detect community acquisition based on the current CDC guidelines.”
Chan and other health officials have been adamant: There is no evidence of community transmission so far. A vast majority of the more than 90 people who have been tested so far have not been tested positive for the virus.
And New Hampshire has had a relatively low number of confirmed cases of Covid-19 – 7 as of Saturday morning. But Sherman and others argue that with testing handed out sparsely, it is likely that there are more cases out there among people who have been turned away.
Against that reality, Sherman said the state should have been taking more proactive steps to encourage event cancellations. As of Friday evening, state policy was not to advise Granite State businesses or organizations to cancel events, Sununu said.
“The big question is if we can’t do (wider testing), what is the appropriate response? I would lean towards being overly protective,” Sherman said.
For now, Thomas, her two daughters and her husband are doing fine, she says. They have enough food for two weeks. They use the backyard to walk around. They family waiting for the rest result to inform them what to do next.
But her family’s experience suggested that federal officials, state officials and hospitals need stronger collaboration moving forward, she said.
“I’m not blaming anybody,” she said. “I’m just saying we need to figure out a consistent message and a methodology for taking care of people.”
“My daughter works in a hospital,” she said. “How do you know if some of these sick people have it or not if they’re not being tested?”
(Ethan DeWitt can be reached at edewitt@cmonitor.com, at (603) 369-3307, or on Twitter at @edewittNH.)