Reporter’s Notebook: Pregnant And Caught In The Zika Test Backlog
I’m the health reporter here at WLRN, but a couple of weeks ago, I declined to go to a town hall meeting in Miami Beach about the city’s very new status as a Zika transmission zone.
Before that, I skipped out on a tour of Wynwood with Gov. Rick Scott. I didn’t visit Midtown restaurants to report on how local businesses were responding to the CDC’s Zika investigation map. I didn’t cover kids being handed bug spray at the start of school. I didn’t attend a town hall meeting that was moderated by our own Tom Hudson.
All of these events happened in places the CDC has advised pregnant women to avoid.
And I am a pregnant woman.
By now it’s pretty obvious, but early on in the pregnancy—and in the locally-acquired Zika timeline—I decided to disclose my status. Very quickly, the personal and professional started to collide, and it felt like the most transparent thing to do.
For example: When I was reporting on the Zika prevention kits for pregnant women that were promised after the first locally-acquired case was identified, I couldn’t get an answer from the Florida Department of Health about what was in them. At the same time, I was having a hard time tracking one down for my own protection. That became part of the story.
When the governor 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. After all, WLRN’s main studios are five blocks south of the Wynwood Zika zone map. I had been inside the suspected transmission zone before we knew the risks.
The news was scary. And as a health reporter, it was also part of my job to spend a lot of time asking about it.
So on the morning of August 12, I went to my obstetrician’s office, gave a blood and urine sample, and was told that it would take an estimated seven to 10 business days to get my results back.
The news was scary. And as a health reporter, it was also part of my job to spend a lot of time asking about it.
I am fortunate to work with a supportive, collaborative group of reporters in the WLRN newsroom. Just about every person on staff has covered one of the press conferences or rallies held in areas of Wynwood or Miami Beach that I’m supposed to avoid (and there have been a lot of media events in those areas). They’ve shared tape with me and asked questions of politicians and scientists on my behalf.
Which brings me back to that Miami Beach town hall I didn’t attend. Kate Stein covered that one. That’s where 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.
After the story ran, Kate received an email from Sarah Revell, part of the Florida Department of Health’s communications team. The subject line read “Correction Requested:”
“I saw your story on the town hall in Miami Beach. Would you please clarify in your story that Mr. Magazine’s wife’s Zika test was not done at the county health department?
Would you also please add a line that if anyone, especially pregnant women, is having issues with Zika testing or Zika test results to contact their local county health department for assistance. The department is here to assist people and we are happy to help anyone who is having issues with testing.”
So, not really a correction—there wasn’t anything incorrect she was pointing out. It was more of a request to add stuff about health department resources.
But what really stuck out to me was the line about the test not being done at the county health department.
Magazine had told Kate that his wife was tested at Mount Sinai. If a woman gets tested at a hospital or doctor’s office participating in this state-sponsored testing, that Zika test is supposed to get sent right on over to the health department anyway.
I called Mount Sinai to ask about it, and was sent a statement from Dr. Kenneth Ratzan, Chief of Infectious Disease:
“Mount Sinai Medical Center has and continues to follow all procedures and protocols set forth by the Miami-Dade Department of Health, the Florida Department of Health and the Center for Disease Control and Prevention. Mount Sinai Medical Center has not, at any time, done testing on our medical campus or satellite locations. We follow strict DOH protocols which require us to only collect samples and specimens and have them delivered to the DOH in a timely and respectful manner.”
Press releases and other communications from FLDOH officials have repeatedly insisted it takes one to two weeks to get results. And that made Kate and me wonder if there was something different about how fast samples were being processed from health department clinics versus samples taken at hospitals and private practices.
Kate asked FLDOH but she still hasn’t gotten an answer.
Meanwhile, Kate went to another town hall where, after a certain amount of pushing, Dr. Lillian Rivera, head of the Miami-Dade County Department of Health, said local officials are preparing women for longer wait times.
“It could be four weeks, it could be five weeks,” Rivera said. “We are preparing them for that.”
Rivera has been quick to follow these comments by pointing out the testing itself can take a really 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 get sent out to the U.S. Centers for Disease Control and Prevention for an even more specialized test to confirm it’s Zika and not Dengue or something else that can cause false positives.
Here’s the thing: The state has only sent 174 tests to the CDC for clarification—and that includes the tests of people who aren’t pregnant. It doesn’t explain why we’ve been hearing stories of long wait times for results and backlogs of hundreds more pregnant women’s Zika tests.
Dr. Christine Curry, an obstetrician with the University of Miami and Jackson Health System, explained to me at a Zika forum hosted by UM why this is so important.
“It’s a negative impact because 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.
Curry says it’s good that all pregnant women can get tested for Zika. But it can change the way doctors screen the newborns of women who are still waiting on their Zika test results:
“Do we do more invasive, more aggressive testing? Do we do blood tests and urine tests and a spinal tap on the child?”
Linger on that thought for a second: a spinal tap on a newborn because the mother hasn’t gotten her test results back.
Being the pregnant health reporter in the middle of this particular emerging infectious disease story gives me a front row seat for the anxieties and frustrations with how the spread of Zika has been handled.
But this? The image of my tiny newborn getting poked and tapped because my test results aren’t done yet? This is where I start to get nervous. And angry. I’ve been waiting about five weeks now for my results.
Zonnia Knight compares the waiting period for the test results to being told there are spiders in the room.
A fellow pregnant South Floridian I met while working on an earlier story about Zika and prenatal care, Zonnia Knight, 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 said. “To me, there was a mosquito everywhere.”
Knight waited three weeks with those ghosts before her Zika results came back. She was negative.
Not that it’s easy to wait any amount of time.
Another woman I’ve met in the course of reporting, Tracy Towle Humphrey, went to a private lab for her test and bypassed the health department testing. Without insurance, those tests can range from about $150 to almost $800.
Towle Humphrey hasn’t had to pay anything with her insurance. Within one week, she got her negative results back.
But she said 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?’”
In my case, with my long-outstanding results, I did what Sarah Revell from FLDOH recommended women do in her not-really-a-correction correction email to Kate Stein; I called the department of health.
I got bounced around a little bit. And wearing my patient hat, I didn’t identify myself as a reporter. I was afraid that might affect my ability to get information on my own records.
I kept getting 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.
And when she did, I learned my test results were completed in the state lab in Jacksonville.
The woman in epidemiology said they were apparently completed on August 19 and August 26.
As of September 14, my doctor still hadn’t received the results.
“Your story is completely consistent with my understanding,” said 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 a backlog of as many as 800 or 900 pregnant women waiting on their Zika test results. The waitlist is so big, he can’t even make a good calculation on the average turnaround time. Though last Friday, after there had been a bunch of media reporting on the issue, he got a batch of about 300 results back from the state all at once.
“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 said.
We asked the state about why it’s taking so long to get results back. In an email, the communications department again pointed out that tests sent to the CDC take longer to process.
But remember, 174 Zika tests have been sent to the CDC. That doesn’t come close to the peak of 800 or 900 tests in the Jackson backlog.
I followed up, specifically asking what the holdup is on releasing results once tests are complete. A spokesperson emailed back:
“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.”
When asked if there was anything else she wanted to say about why it’s taking so long to get results back, this is what she said:
“The department understands the possibility of a Zika infection during pregnancy is scary for expectant mothers and we work as quickly as possible to provide pregnant women with accurate and timely information about their test results. On average, once our public health labs receive a sample it can take one to two weeks to turn-around test results. However, depending on the results, additional testing may be required by the Centers for Disease Control and Prevention, which can take several weeks.
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. The department remains committed to doing everything we can to protect expectant mothers and their growing babies in our state from the threat of Zika.”
On Wednesday, Gov. Scott announced the CDC is sending seven additional people to help out with labs and testing, “in order to ensure pregnant women get results back faster.”
No mention how much faster.
Kate Stein contributed to this report, obviously.
UPDATE: After this story aired Friday, I got a call from the county health department. They released my test results to my doctor, who shared them with me: They are negative.