Health Care

Zika testing hard to find if you’re not pregnant, patients say

Lou Dickinson, 36, of Miami shows a rash that spread across her body and which she suspects was caused by Zika virus infection. Dickinson, who said she also had a fever, muscle pain and red eyes, had difficulty getting a Zika test.
Lou Dickinson, 36, of Miami shows a rash that spread across her body and which she suspects was caused by Zika virus infection. Dickinson, who said she also had a fever, muscle pain and red eyes, had difficulty getting a Zika test. Handout

With mosquitoes spreading Zika in South Florida, health officials have been clear in their guidance on who needs to be tested for the virus. Pregnant women and those planning to conceive are tops on the list.

For everyone else, the testing advice is not so clear.

“I’ve been bounced around,” said Shayni Rae Kinney, a retail consultant from Brooklyn who has been living and working in Miami Beach since Aug. 5. Kinney said it took nine days from the date she first broke out in a rash and mild fever on Aug.18 until she finally met with a Florida Department of Health epidemiologist who took blood and urine samples.

Initially, Kinney says, she visited a walk-in retail clinic on Miami Beach, where a physician’s assistant advised her to take pain and allergy medication for her symptoms but Zika tests weren’t offered. Then she went to Borinquen Medical Center in Miami, where she waited five hours for a nurse to collect samples for a test that came up positive — but the results were not reported to the state health department.

Instead, Kinney’s test results were sent to the New York state health department, because that’s where she lives. The Florida Department of Health didn’t find out about her case until she showed up at their doorstep in Miami six days after her first Zika test.

“There is no structure, no authority,” Kinney said. “Nobody knows what’s going on. Nobody’s giving any instruction, nothing. I’m really furious.”

Florida’s Bureau of Public Health Laboratories operates three labs serving the state’s 67 counties. All are capable of Zika testing. The central lab is in Jacksonville, with branches in Tampa and Miami.

A month after health officials reported that mosquitoes are spreading Zika in a one-square-mile section of Miami’s Wynwood neighborhood, followed by a second area of active transmission in Miami Beach identified on Aug. 19, Florida residents and visitors are finding it difficult to get tested for the virus.

A spike in demand for Zika diagnostics, Florida’s limited lab resources for processing tests, and everyday hurdles to healthcare access — from insurance coverage to transportation to apathetic clinicians — are keeping people who may have the disease from getting tested and reporting their infection to the state health department.

Florida offers free Zika testing for all pregnant women, regardless of whether they have had symptoms, through the state health department. Health officials also are testing for Zika in limited areas as part of 13 investigations into local infections in Miami-Dade, Palm Beach and Pinellas counties.

For everyone else, though, testing has become a source of frustration.

At a community meeting this week in Miami Beach hosted by state Rep. David Richardson, residents repeatedly said they were unhappy about lack of access to Zika testing and the amount of time it takes to get results — even for pregnant women.

Joseph Magazine, a South Beach resident who attended the meeting, said his pregnant wife broke out in a rash and other symptoms about four weeks ago. He said he took his wife to the emergency room at Mount Sinai Medical Center but has yet to find peace of mind.

“We’ve been told results can take four to six weeks,” Magazine said, his voice trembling. “We should be out shopping for baby clothes, but we can't do so. ... If a pregnant woman with symptoms is taking six weeks to get results, how many other people are waiting for results?”

Nobody knows what’s going on. Nobody’s giving any instruction.

Shayni Rae Kinney, Miami Beach visitor who tested positive for Zika

State Surgeon General Celeste Philip, a panelist at the Miami Beach meeting, spoke with Magazine afterward. Later, she told the audience of about 100 people at the Waverly condominium in South Beach that Florida has three public labs — in Miami, Tampa and Jacksonville — and that all are capable of Zika testing.

Philip said commercial labs offer testing, too, and that federal regulators are working to expedite diagnostics. She cited an example of the Food and Drug Administration giving emergency approval on Aug. 26 for the pharmaceutical company Roche to begin using a diagnostic blood test for people with Zika symptoms.

After the meeting, Philip said she thinks the health department’s process for identifying and reporting Zika cases is working well.

“I’ve not been hearing a lot of issues,” she said, “but we certainly want to know about them.”

During Florida’s Zika outbreak, the health department so far has conducted Zika virus testing for more than 4,452 people, and the state currently has the capacity to test 5,755 people for active virus molecules in their urine and 6,852 people for Zika antibodies in their blood.

Through its three public health labs, Florida’s health department can conduct about 150 active Zika molecular tests and 130 Zika antibody tests daily.

“We are operating at full capacity,’’ said Mara Gambineri, a health department spokeswoman. “We’re receiving approximately 225 samples per day.”

225 Zika test samples received by Florida Department of Health each day

Florida advises people who are not pregnant — but who live and work in an area of active Zika transmission — to visit their doctor or county health department if they experience symptoms similar to Zika, which can cause fever, muscle pain, a rash and red eyes.

Lou Dickinson had all those symptoms this week. The 36-year-old woman, who lives near the center of Wynwood’s Zika zone and also works inside the 1.5-square-mile area where mosquitoes are spreading the virus in Miami Beach, said she developed a small rash on her torso and began to feel muscle aches and a slight fever on Sunday morning.

Symptoms worsened throughout the day, she said, and on Monday she awoke to find the rash had spread to the rest of her body. Dickinson said she called the health department for advice on Zika testing, and that the person she spoke with tried to talk her out of it.

“She said it would just be a waste of my money and what would I do differently if I found out I was positive, that it just didn't make any sense for me to be tested,” Dickinson said. “It would just be a waste of my money.”

Dickinson said she found it strange that the health department would advise her against getting tested.

“Wouldn’t they want to know how many cases there are?” she asked. “They don’t want to know.”

The next call Dickinson said she made was to her doctor in Miami Beach, who dispatched an electronic prescription to a commercial lab for a Zika test. But getting tested was not as simple as getting a prescription.

Athenahealth, a health information company, reported the number of Zika tests ordered on its network increased by about a third, from 451 the week of August 23 to 599 the week of August 30. Over the same period in Florida, tests ordered also rose by 33 percent, from 273 to 362. / Athenahealth

“I called my health insurance to see if it was covered,” said Dickinson, who is insured by Florida Blue through her employer, “and apparently you have to have it be proven that it is medically necessary to get the test. Otherwise it would be about $500. If it was proven to be medically necessary, which I’m assuming means I was pregnant, it would be a $50 co-pay.”

Florida Blue spokesman Doug Bartel said he could not comment on an individual policy holder. But he said Florida Blue does cover Zika tests when one is ordered by a physician.

“If ordered by a physician, Zika testing is covered at the same level as other diagnostic testing, and is subject to the same applicable deductible, co-insurance or co-payment outlined in the member’s plan,” Bartel said in a written statement.

Dickinson disagreed: “It was never that simple.”

She provided the Miami Herald with a transcript of a message she received from her employer’s insurance benefits administrator stating that her physician would have to prove that a test was medically necessary and receive prior authorization.

Dickinson said she cannot afford to pay $500 for a Zika test. She created a personal fundraising website this week to solicit donations, raising $275 in two days. On Wednesday, Dickinson said she visited her doctor and started the process to get her insurance company’s authorization for a Zika test.

Then she went to a commercial lab in Miami and paid $200 for a test. Dickinson said she may have to pay the full $500 if Florida Blue rejects the claim. But her experience has left Dickinson thinking that health officials aren’t genuinely interested in tracking local infections.

“I feel they’re actually trying to hide the number of cases,” she said, “because how many people who live in this neighborhood can afford a $500 test?”

I feel they’re actually trying to hide the number of cases.

Lou Dickinson, Wynwood resident with Zika symptoms

Kinney, the Brooklyn resident who has been living and working in Miami Beach, said her health insurance covered the Zika test at Borinquen. She paid $35 to register at the clinic, another $30 for the office visit, and an $11 co-pay for the Zika test. Uber rides to clinics resulted in a total out of pocket cost of about $215, she estimated.

Diego Shmuels, director of quality and clinical practice practice management for Borinquen, said the clinic sent Kinney’s samples to a commercial lab to be tested, but the lab reported the positive results to New York’s health department and not Florida’s.

“They reported it to where the patient said she lived,” Shmuels said. He said the lab also reports results to Borinquen, but that it had not been relaying Zika test results as urgent — something Shmuels said has since been addressed.

Kinney said she is glad to have finally reached an epidemiologist with the state health department, but she’s disappointed by how many steps it took to reach the right person.

“Unless I really kind of made a stink, I wouldn’t have gotten to her,” she said. “I would think you would want people to get tested so you can give them directives on what to do, and things that can happen. Can you get it twice? What happens if I’m eating somewhere and I get bit, and that mosquito bites somebody else?

“If I can give it to someone else, you should advise me to not be outside,” she added. “I was thinking of going to Mexico next month. Should I be concerned? How long is it in my system? These are the kinds of things that need to be communicated better. People need to be informed.”