Before I begin, a quick note: I worked on the Zika response in Puerto Rico during November and December of last year. A section of this blog post deals with what is happening in Puerto Rico with regards to investigating Zika cases, and it includes excerpts from news reports indicating that there is a lot of friction between the Puerto Rico Health Department and the Centers for Disease Control and Prevention. For obvious reasons, I will not give you private, confidential, or sensitive information I gained there. And, as usual, any opinions here are my own and not those of anyone who has employed me, my school, friends, colleagues, etc. You know the drill. End of note.
Back in October of 2016, a paper was published by CDC and Puerto Rico Health Department (PRDH) scientists forecasting the number of babies born in Puerto Rico (PR) with Zika-associated microcephaly. The paper in JAMA Pediatrics has the following abstract:
“Importance Zika virus (ZIKV) infection during pregnancy is a cause of congenital microcephaly and severe fetal brain defects, and it has been associated with other adverse pregnancy and birth outcomes.
Objective To estimate the number of pregnant women infected with ZIKV in Puerto Rico and the number of associated congenital microcephaly cases.
Design, Setting, and Participants We conducted a modeling study from April to July 2016. Using parameters derived from published reports, outcomes were modeled probabilistically using Monte Carlo simulation. We used uncertainty distributions to reflect the limited information available for parameter values. Given the high level of uncertainty in model parameters, interquartile ranges (IQRs) are presented as primary results. Outcomes were modeled for pregnant women in Puerto Rico, which currently has more confirmed ZIKV cases than any other US location.
Exposure Zika virus infection in pregnant women.
Main Outcomes and Measures Number of pregnant women infected with ZIKV and number of congenital microcephaly cases.
Results We estimated an IQR of 5900 to 10 300 pregnant women (median, 7800) might be infected during the initial ZIKV outbreak in Puerto Rico. Of these, an IQR of 100 to 270 infants (median, 180) may be born with microcephaly due to congenital ZIKV infection from mid-2016 to mid-2017. In the absence of a ZIKV outbreak, an IQR of 9 to 16 cases (median, 12) of congenital microcephaly are expected in Puerto Rico per year.
Conclusions and Relevance The estimate of 5900 to 10 300 pregnant women that might be infected with ZIKV provides an estimate for the number of infants that could potentially have ZIKV-associated adverse outcomes. Including baseline cases of microcephaly, we estimated that an IQR of 110 to 290 total cases of congenital microcephaly, mostly attributable to ZIKV infection, could occur from mid-2016 to mid-2017 in the absence of effective interventions. The primary limitation in this analysis is uncertainty in model parameters. Multivariate sensitivity analyses indicated that the cumulative incidence of ZIKV infection and risk of microcephaly given maternal infection in the first trimester were the primary drivers of both magnitude and uncertainty in the estimated number of microcephaly cases. Increased information on these parameters would lead to more precise estimates. Nonetheless, the results underscore the need for urgent actions being undertaken in Puerto Rico to prevent congenital ZIKV infection and prepare for affected infants.”
I’m not a big fan of modeling for predicting trends in infectious disease. There are just way too many factors at play, and all of those factors cannot possibly be put into a computer (today, maybe in the future) in order to come out with an accurate prediction of what is going to happen. Nevertheless, if the methodology is sound, the results can be used as a guide on what to expect. In this case, we should see between 110 and 290 cases of microcephaly.
But published reports in the media only show two cases. The first baby with microcephaly was born in October and the second in December. After that, only a total of 16 cases of “birth defects” have been reported.
Now there are news reports that cases of microcephaly in Puerto Rico may be underreported. According to a news report:
“Some observers believe Puerto Rico, which is heavily dependent on tourism, is downplaying the scale of its Zika problem.
“Puerto Rico’s not escaping this. They’re just hiding,” one former US official said of the situation. The individual, who spoke on condition of anonymity, said months ago it was clear “dozens and dozens” of babies in Puerto Rico bore the hallmarks of Zika damage. But territorial health officials declined to label most of them cases of Zika congenital syndrome.
“They’re kind of in denial about what the problem is,” the former official said. “And six months, a year, two years from now there will be all these babies who aren’t learning and all these problems that will come to light.”
Puerto Rico’s health department did not respond to a request for comment, nor did its top epidemiologist.
Last October, without fanfare, the Centers for Disease Control and Prevention stopped reporting the outcomes of pregnancies in US territories in which women had been infected with Zika. Without providing details, the agency simply said that Puerto Rico wasn’t counting cases the same way.
“CDC is using a consistent case inclusion criteria to monitor brain abnormalities and other adverse pregnancy outcomes potentially related to Zika virus infection during pregnancy in the US states and territories. Puerto Rico is not using the same inclusion criteria,” the CDC website states.”
“US health officials have privately expressed deep concern that Puerto Rico is downplaying the extent of its Zika problem and have struggled to get a grasp on the issue because of a protracted and ugly dispute with health officials in the territory, according to a document obtained by STAT.
The rift was so contentious that, at one point, health leaders in Puerto Rico refused to meet with their counterparts from the Centers for Disease Control and Prevention. The multipage document suggests that the dispute has obscured the extent of the territory’s Zika problem for more than half a year.
The focus of the dispute centers on Puerto Rico’s handling of a surveillance system set up to track pregnant women and identify infants and fetuses with Zika-related birth defects — and concerns that officials there are undercounting cases. The registry is called ZAPSS (the Zika Active Pregnancy Surveillance System) and the CDC awarded Puerto Rico’s Department of Health $9.5 million in grants to establish and operate it on the island.
But for a period of several months last year, the Puerto Rican official who was the principal investigator on the project declined to communicate with CDC authorities. He also demanded a written apology from a senior CDC figure who had questioned the work of Puerto Rican health authorities before he would resume communication and collaboration.”
Unfortunately, these kinds of interpersonal frictions are not something new in public health responses to crises where multiple agencies are involved. We’re all human, after all. We all come into the response with our own idea of what needs to be done, how, and by whom. What’s worse, most of the people who make it to the upper echelons of their profession are type A personalities who won’t budge on their views.
This all leads to friction.
What is most unfortunate in the situation in Puerto Rico, if the reports that are coming out are true, is that the misclassification of case counts will lead to an incomplete — outright flawed — understanding of the situation there. If you don’t know what is going on, then you don’t know how to attack the problem, you don’t know who or how to help. In essence, the victims of this friction are not the professional careers or the feelings of those involved. The victims are the people being affected by the outbreak.
I saw this same kind of friction during the H1N1 pandemic while working at the state health department. Personalities conflicted, bosses wanted to take the lead, and underlings felts used and abused without credit. I’m not going to deny to you that I came home very angry many times because things that needed to be done — in my opinion — were not being done. What was worse to me was that things being done were uselessly spending our resources.
Again, it happens.
It’s probably going to happen again and again because it is human nature to always be competing with each other. Even when we work as a team toward a common goal, we’re still competing with each other on some level. We want to be promoted, paid better, get the girl, make the grade, earn the title, etc. Rarely will you encounter a player on a sports team who would not take the chance to score a point if given it.
I hope that at one point the players in that drama in PR gain control over their egos and sees the big picture. Because the big picture is about getting the epidemiology right so that the interventions are the best ones. It serves no one, really, to have children be born with defects — preventable ones — and not get services because they’re not counted. In the end, all of this coming to light is even less productive at best, and destructive of lives at worst.