I’m the health reporter covering the Zika story here at WLRN in Miami, and I’m a pregnant woman.
When Florida Gov. Rick Scott made free Zika testing available to all pregnant Floridians through the Florida Department of Health, I was one of the more than 2,200 women who took him up on the offer.
My station’s main studios are five blocks south of the Wynwood Zika zone, an area that authorities are recommending pregnant women avoid (though the advisory was updated to a less dire warning on Monday). As it turned out, I had been inside the suspected transmission zone before we knew the risks.
So on the morning of Aug. 12, I went to my obstetrician’s office, gave blood and urine samples and was told that it would take about seven to 10 business days to get my results.
Four and a half weeks later, I was still waiting. I had plenty of company.
My colleague Kate Stein has been helping me cover the story, whenever it veers into an area where the Centers for Disease Control and Prevention has advised pregnant women to avoid. Stein covered a Miami Beach town hall I didn’t attend. There, she met Joseph Magazine, who pleaded with officials to help his wife get her Zika test results back. She was more than five months pregnant, had experienced Zika-like symptoms a month earlier, and was waiting to hear if she had been infected.
Press releases and other communications from the Florida health department officials have repeatedly insisted it takes one to two weeks to get results.
But at another town hall, after some pushing, Dr. Lillian Rivera, head of the Miami-Dade County Department of Health, said women may wait longer. “It could be four weeks, it could be five weeks,” Rivera said. “We are preparing them for that.”
Rivera was quick to point out complete testing can take a long time, depending on the first round of results. That’s because the Zika test for a pregnant woman can actually be a couple of different tests. The first test is to see if she has an active infection. If that’s negative, there’s a test to see if she’s had the virus in the past 12 weeks. If that’s negative, case closed.
But if the second test is positive, or inconclusive somehow, then the woman’s samples are sent to the CDC for an even more specialized test to confirm it’s Zika and not dengue or another virus that can cause false positives.
As of last week, Florida had sent 174 tests to the CDC for clarification, including the tests of people who aren’t pregnant. That total doesn’t explain the backlog in which I was snarled.
Obstetrician Christine Curry, with the University of Miami and Jackson Health System, says it’s helpful that all pregnant women in Florida can be tested. But getting timely test results is important, too.
“If someone’s early first trimester or second trimester and we delay disclosure because we don’t have a result by two weeks, four weeks, six weeks, eight weeks — that may be long enough for them to be out of the window of being able to terminate that pregnancy,” she said.
Florida law restricts abortion access after 24 weeks. Later-term abortions are also more complicated procedures and more emotionally fraught for parents.
Delays in testing results can change the way doctors screen the newborns of women who are still waiting on their Zika test results, Curry says. “Do we do more invasive, more aggressive testing? Do we do blood tests and urine tests and a spinal tap on the child?”
I spoke to Curry after I had been waiting more than a month for my results and that image jars me: a spinal tap on my newborn because of a bureaucratic backlog on test results?
This is when I start to get nervous and angry.
Zonnia Knight, a fellow pregnant South Floridian, compares the waiting period for the test results to being told there are spiders in the room.
“You find yourself scratching, or looking around, swatting off ghosts and stuff,” she says. “To me, there was a mosquito everywhere.”
Knight waited three weeks with those ghosts before her Zika results came back. She was negative.
Another pregnant woman, Tracy Towle Humphrey, went to a private lab for her test and bypassed the health department. Without insurance, those tests can range from about $150 to almost $800.
Humphrey’s insurance covered it, though. Within one week, she got her negative results back.
But she says for that week, she had trouble sleeping. She would wake up in the middle of the night “thinking, ‘Oh my gosh, what if it’s positive? What are we going to do?'”
After four and a half weeks, I called the Florida Department of Health.
I didn’t identify myself as a reporter. I was afraid that might affect my ability to get information on my own records. I was repeatedly told the health department doesn’t give out results over the phone and they’ll be sent to my doctor.
But after explaining a couple of times that I just wanted to know where my test was, I ended up talking to someone in the local epidemiology department who said she might be able to look up my test. She did, and I learned my test results were completed in the state lab in Jacksonville on Aug. 19 and Aug. 26.
So my completed tests were sitting there, I learned, for more than two weeks, and neither I nor my doctor had been informed of the results.
“Your story is completely consistent with my understanding,” says Dr. David Andrews, who runs the pathology laboratories at Jackson Health System and is on faculty at the University of Miami’s med school.
He told me he’s had upward of 900 pregnant women waiting on their Zika test results. The backlog is so large, he can’t even make a good calculation on the average turnaround time. “It is my sense that most of these specimens have been tested and are being tested in a reasonable amount of time, but the bottleneck appears to be getting us back the reports,” Andrews says.
Mara Gambineri, a spokesperson for Florida’s health department, sent an email that didn’t specifically respond to my question about why it takes so long to release results once the tests are completed:
“The department has been working with area hospitals and providers, particularly in Miami-Dade County, to ensure doctors are receiving test results quickly and communicating the information with their patients. We continue to work to improve and streamline the process.”
Another spokesperson named Sarah Revell said in the same exchange of emails:
“The department continues to dedicate significant resources to our public health labs and we have contracted with a private lab to assist with processing Zika tests quickly and accurately. Florida is the first and only state to offer such extensive resources to pregnant women and we are constantly working to improve our process.”
On Wednesday, Sept. 14, Gov. Scott announced the CDC is sending seven more people to help out with labs and testing “in order to ensure pregnant women get results back faster.”
On Friday, Sept. 16, a few hours after WLRN aired a story about the testing backlog and my wait, I got a call from the county health department asking for my doctor’s contact information. They released my test results to my obstetrician, who shared them with me: They are negative.
Kate Stein contributed to this report. This story is part of a reporting partnership with NPR, WLRN and Kaiser Health News.