Matt Shipman is the research communications lead at North Carolina State University and a frequent story and news release reviewer. He is author of the Handbook for Science Public Information Officers (University of Chicago Press, 2015).
There are two viral diseases that, if they infect pregnant mothers, can cause birth defects and a range of other health problems for their babies. One disease affects thousands of infants each year in the United States, while the other affects fewer than a hundred. Why has news coverage focused almost exclusively on the less common disease? And what does that focus mean for public health efforts to control both diseases?
The first disease is cytomegalovirus infection, or CMV, which you may not have heard of. The second disease is Zika virus infection, which you have almost certainly seen in the headlines.
CMV is endemic to the United States, meaning it’s well established and the rate of transmission has not changed dramatically over time. Zika is not endemic. Although scientists have been familiar with Zika since it was first discovered in Uganda in 1947, it was thought of as being relatively innocuous – when it was thought of at all. But in 2007, things started to change. That’s when Zika first appeared in Micronesia. It then began appearing in other parts of the world: Cambodia in 2010, Thailand in 2012, French Polynesia in 2013 and – much closer to the U.S. mainland – Brazil in 2016.
And it was in February 2016 that Zika began drawing attention far and wide – that was when the World Health Organization announced that “a causal relationship between Zika infection during pregnancy and microcephaly is strongly suspected, though not yet scientifically proven.” Microcephaly is a birth defect that impacts the development of the baby’s head and brain. It is linked to learning disabilities, hearing loss, and a range of other health problems. (Several other diseases, known as TORCH [toxoplasmosis, “other” e.g. syphilis, rubella, CMV, and herpes] infections, can also cause birth defects if the mother is infected during pregnancy.)
Suddenly, Zika was scary. And rather than an established, endemic disease, Zika was an epidemic – a disease that was spreading rapidly in new territory. And that difference was likely crucial.
“I think the difference is that one [Zika] appeared in epidemic form, with lots of unknowns about epidemiology, impact, etc.,” said David Tuller, DrPH, a senior fellow in public health and journalism at the Center for Global Public Health UC Berkeley’s School of Public Health. “The other [CMV] basically continues at the same level it always has – it’s endemic, and therefore wouldn’t be likely to trigger the kind of fear and anxiety that Zika created. People tend to get used to steady rates of various things – it’s when changes happen that coverage and attention shoots up.”
“It has been our experience that diseases with a bigger public scare factor will garner headlines, while slow and steady epidemics tend to be widely ignored,” said Michelle Levander, founding director of the Center for Health Journalism at the University of Southern California.
Researchers we spoke with identified the same factors – fear and the epidemic/endemic nature of the diseases – as driving the media disparity.
“I think the initial, widespread coverage of Zika was due to fear of the unknown, because we didn’t know how widespread the Zika epidemic would become, or how frequent the cases of congenital Zika would be from the initial reports,” said Sallie Permar, MD, PhD, a professor of pediatrics at Duke University who studies CMV. “CMV has had the same prevalence and incidence since the 1960s.”
But while the research community understood the attention being paid to Zika, they were frustrated at the lack of attention being paid to CMV.
“When seeing the news coverage of Zika, people in the CMV field felt like, ‘You guys, we have a Zika here already. It’s called CMV,’” said Permar.
In 2016, articles appeared in publications like the New York Times, Nature and Quartz, all addressing CMV in the context of the Zika epidemic. As the New York Times’ headline put it: “CMV is a greater threat to infants than Zika, but far less often discussed.”
But those articles were one-offs, and there has been little or no ongoing coverage of CMV – which has not been the case for Zika.
For example, I searched for news stories featuring “Zika” for the three-month period from Nov. 6, 2017 to Feb. 6, 2018. That search turned up a host of news stories in high profile news outlets, such as NPR (at least twice), TIME (at least twice), and the New York Times.
During that same time period, there were almost no news stories in mainstream media outlets featuring the term “cytomegalovirus.” And the few stories we could find that did appear in mainstream outlets were not actually focused on CMV. For example, a human interest story from ABC News was focused on a little girl who got hearing aids from an “unlikely donor” – CMV was mentioned in passing as being why the little girl needed hearing aids in the first place.
“There was definitely some frustration in the CMV community about the attention given to Zika when CMV causes far more disease, and always has, and always will, until we make a breakthrough,” Soren Gantt, MD, PhD, MPH, an infectious disease researcher at the University of British Columbia, said.
Which raises another question…
The overwhelming response from CMV researchers is “Yes,” and for several different reasons.
“One reason is that CMV is a preventable infection,” Permar said. “Studies have found that, if pregnant women pay attention to handwashing and other prevention methods, you can limit the likelihood of congenital CMV. Pregnant women hear: Don’t eat lunchmeat, because of Listeria – but perinatal Listeria infections are extremely rare these days. CMV is far more common, but expecting moms aren’t hearing about what they can do to limit their risk – like, don’t put your toddler’s pacifier in your mouth.”
[Zika infection can also be prevented by protecting yourself from the bite of infected mosquitoes.]
“The OB-GYN community in the US has probably under-informed women about the risks of acquiring CMV in pregnancy,” said Mark Schleiss, MD, a professor of pediatrics at the University of Minnesota who has researched CMV since the late 1980s. “The CMV community certainly shares this view, by-and-large. I think it is because so many of us are pediatricians, and so many of us hear the same refrain over and over and over again from mothers of newborn and infants injured by CMV: ‘Why didn’t anyone tell me about this when I was pregnant? Why am I just hearing about this virus for the first time now?’”
[The New York Times story mentioned above delves into the reasoning behind the ob/gyn community’s decision not to counsel women regarding CMV prevention.]
A second reason researchers would like to see more coverage of CMV is diagnosis and treatment.
“We have good testing for congenital CMV in the infant,” Permar said. “We know it’s common, yet we don’t test for it. All of the diseases that we engage in standard screening for in newborns, put together, are less common than CMV.”
Screening is important, Permar says, pointing to research that suggests using antivirals in newborns who are diagnosed with CMV – and are displaying symptoms – can have at least a modest effect on reducing the severity of hearing loss and improving developmental outcomes. (However, it’s worth noting that there is ongoing debate in the pediatrics community about the proper approach to CMV screening.)
And, finally, there is the issue of creating public support for CMV research.
“There was definitely a big influx of money earmarked for Zika,” Gantt said.
“For federal funding agencies, I think that media coverage does have greater impact, since those who control the funding – the U.S. Congress – are accountable to voters, and voter impressions can be influenced by the media,” Schleiss said.
“Certainly as much money as has been devoted to developing a Zika vaccine should be devoted to developing a CMV vaccine,” Permar said. “The NIH budget is under congressional oversight. And if Congress people don’t feel like CMV is something their constituents need addressed – like it was with Zika – CMV is not going to be a priority for NIH or the CDC.”
And that raises one last question…
The journalism professors I spoke to think the answer is yes, there needs to be a more concerted effort to address endemic diseases that affect thousands every year – but that most people haven’t heard of.
“We don’t see things that aren’t changing,” Tuller said. “Why do we accept 30,000 car accident deaths every year, as we do? It’s because the number stays the same every year. We need reporting to challenge our biases.”
“Reporters can play a critical role in improving public understanding of less sexy diseases that exact a disproportionate toll,” Levander said. “Greater understanding can lead to real change — new resources, better disease tracking and a greater investment in solutions.
“At the Center for Health Journalism, we support journalists who write on health disparities without an obvious news hook,” Levander said. “They do so by diving deeper, by marrying great narratives with data and engagement. Finding the people who can bring the numbers to life can go a long way toward illuminating many chronic ills.”
Disclosures: Mark Schleiss is a consultant for Merck corporation. Sallie Permar consults with Pfizer and Merck on CMV vaccines. Soren Gantt receives research support from VBI Vaccines Inc. and Merck for CMV vaccine development and from Meridian Bioscience for CMV diagnostic test licensure.