All Marie wanted was to get the Zika test.
Her husband was working in Cuba, and during a January visit to see him, Marie, a stay-at-home mom living in Texas, had become unexpectedly pregnant.
At the time, Cuba wasn't among the dozens of Latin American and Caribbean countries that the Centers for Disease Control (CDC) had warned travelers to avoid because of Zika, though by March it would be . But Marie was concerned anyway, given its proximity to countries known to be affected by the virus, which is notorious for causing birth defects.
During her visit, Marie had been in swampy areas in her swimsuit, and had been bitten by mosquitoes. Her husband, who had also been bitten, had been horribly sick in December with some strange bug.
She didn't have symptoms of the virus—the rash, red eyes, aching joints, and fever—and she wasn't an obvious candidate given Cuba's Zika status at the time. But she didn't want to take a chance. Having read everything she could about maternal-fetal Zika transmission, she was aware of one alarming fact: The biggest risk to the baby is first-trimester exposure. Still, getting tested was proving to be difficult.
Despite widespread media coverage of Zika, there has been confusion and limited access to testing in the US. And as health officials try to anticipate a possible impending outbreak in the US, there is speculation that the politics of abortion will further complicate matters for women who might want to consider terminating a Zika-affected pregnancy.
Texas has the fourth-highest number of Zika cases in the US, so Marie expected the state's practitioners to take a zealous approach to diagnosis. Yet when she called doctors' offices and clinics to request the test, she was told she was not entitled to one, because Cuba was not on the list of countries with Zika. When she spoke to San Antonio's health department, she was told the same thing.
Anil Mangla, assistant director of health at the San Antonio Metropolitan Health District, told VICE that that is indeed the department's policy. But not everyone agrees with this approach. "Zika was already in the Caribbean, so it was only a matter of time before it hit Cuba," Peter J. Hotez, dean of the National School of Tropical Medicine at Baylor College of Medicine, told VICE. "It's possible that at the time Marie was trying to get tested, there wasn't easy access to do so, but it's a virus that is spreading very, very quickly and we have to anticipate where Zika is heading and have testing available. [The CDC list] is not in fact a legitimate reason for women to be turned away from testing."
The CDC itself concedes that its list is not necessarily the right reference point for a doctor treating a patient like Marie. "Given her travel history and the status of Zika in the Caribbean, it would not be unusual or unnecessary for her to ask for a test," Tom Skinner, a spokesperson for the CDC, told VICE. "The guidelines are in place to be just that, a guide. That doesn't mean that doctors can't act outside of them and at the end of the day."
Marie eventually called an ob/gyn in San Antonio and explained her anxieties, but the doctor seemed vague about what she should do. "You can talk to my physician's assistant about that," he told her. At her appointment, Marie told the assistant that she needed to get tested for Zika. "She knew nothing about it," Marie recalled. Then she had to wait while the assistant gathered information about the disease. Ultimately the office still denied her access to the test, without explaining why.
Testing for Zika so far in the US has been a convoluted process for doctors, who are required to send specimens to their local health departments, which in turn send them to the CDC for evaluation . A new diagnostic test got emergency approval from the FDA two weeks ago, raising hopes that access to testing will improve in the future. But there's still a general lack of understanding of the disease among doctors as well as patients.
"There's literally new information every day," Christine Curry, an assistant professor of obstetrics and gynecology at the University of Miami, who is treating three of the four pregnant women with Zika in Florida, told VICE. "I think it has increased the number of times I say, 'I don't know.'"
Confusion aside, Curry worries that abortion laws are going to influence testing and treatment of pregnant women with Zika. "My concern is the states that stand to be the most affected by Zika have the most restrictive abortion laws in the country," she said.
Marie's experience hinted at this scenario. The ob/gyn she saw seemed intent on calling attention to her growing fetus. "Look at that beautiful baby," she recalled him saying to her. "Isn't that baby nice?" Marie had the impression she was running into a political agenda. "I felt just by asking for the test, they made assumptions that I would terminate [the pregnancy]," she said. "You hear about girls who are forced to look at their child before they terminate," Marie said. "It was horrible."
"I'm worried that not all providers approach the issue with the nuance it deserves," Kelly Dineen, PhD, assistant director at the Albert Gnaegi Center for Health Care Ethics, told VICE. "Providers should know that just because a pregnant woman gets tested for Zika doesn't mean she wants an abortion immediately or at all. She could be gathering information, considering future implications about her health or the health of the baby as well as preparing to care for a child with a disability."
Whether or not some doctors are indeed withholding testing for fear of an increase in abortions remains to be seen, but there is early concern about the role Zika will play in the US's already heated debate over the issue.
"It's unconscionable to think women would have very severely affected pregnancies and would struggle in the US to end a pregnancy they do not want to carry," Curry said. Dineen thinks it's too early to tell if there will be more abortions in the US as a result of the Zika virus. "But it's likely to bring abortion laws up for questioning, especially in states like Texas, where regulations already limit access," she said.
Ultimately, Marie miscarried at 13 weeks. "I'm devastated and exhausted," she said. She'd finally managed to get tested shortly before, at a clinic in another state.
Her Zika test was negative.