Figure. Geovane Silva holds his son Gustavo Henrique, who has microcephaly, at the Oswaldo Cruz Hospital in Recife, Brazil, on Jan. 26. UESLEI MARCELINO / Reuters. (https://goo.gl/images/fYC5fk)In their July 2017 Pediatrics in Review article “Mosquito-borne Infections,” Drs. Rajagopalan and Ilboudo remind us that it has been more than 50 years since U.S. pediatricians have faced a virus that can cause in utero infection and devastating congenital anomalies in the newborn. But now, there’s the Zika virus. This congenital infection is different than any other that causes fetal/neonatal anomalies—evidence now strongly indicates that Zika also can cause a congenital syndrome. The full spectrum of the syndrome is still being elucidated, and we are certainly going to learn much more about Zika Congenital Syndrome (ZiCS) over time.
The last time I wrote on this subject, I cautioned my fellow pediatricians to be aware of the possibility of a ZiCS. I now come to you to say that you must be more engaged. Learn as much about ZiCS and Zika as you can. Develop links with our obstetrical colleagues, and champion the establishment of multidisciplinary Zika Response Teams (ZRTs) in our practice areas.
When we see Zika-exposed infants, with or without ZiCS, we must be prepared. ZRTs may not be necessary for the long haul but certainly would be of tremendous benefit early in the Zika epidemic. Some observers have compared the potential Zika epidemic to the HIV epidemic of the 1990s; others have likened it to the rubella outbreak in the 1960s. Although Zika is unique, it has elements common to both the HIV and rubella epidemics.
As in perinatally acquired HIV infection, the mother of a Zika-exposed neonate may not exhibit any symptoms or signs that would make her healthcare provider suspicious. As with rubella, there is a well-defined and obvious list of stigmata for ZiCS; the most common one is microcephaly, but the list is growing. And, paralleling the early HIV epidemic, diagnostic tests for Zika are not straightforward. However, as with both Rubella and HIV, we pediatricians could — through engagement, championing and advocacy—help children with ZiCS.
For example, depending on where one is located, systems of care for Zika-afflicted babies could take advantage of several existing programs, such as the multidisciplinary centers for medically complex children, centers for congenital infection evaluation and follow-up, or centers for pediatric HIV care. And while all U.S. states are not likely to be affected equally, infected/exposed pregnant women and infants could eventually move to any of the 10 states that do not have the Zika mosquito vector. It would be important that these states have a link with one or more centers with infrastructure to respond to and provide expertise in management of Zika infection. Pediatricians in these 10 states need to make sure that such links exist.
This is similar to what happened in the HIV epidemic. Each state may have its own unique strategy to respond to the Zika-exposed and ZiCS babies, depending largely on existing infrastructure, strength of programs, referral patterns for highly specialized care, and resource limitations (including the availability of specialists). However, in every state, we pediatricians must be engaged at all levels, and we must start now!
We have the luxury of time (not much, though) to be better prepared for a long-term, organized and more structured follow-up of not only babies with ZiCS but also Zika-exposed infants who may have unidentified, long-term disabilities and challenges. The pediatrician in the medical home could follow these Zika-exposed babies, while a regional Zika center can coordinate care with the pediatrician.
Identification of Zika centers would allow us to follow the Zika-exposed babies more formally and offer them all the necessary services, decrease the burden of coordination of services and intensive case management, and enroll the Zika-exposed babies in national registries.
And, like other disease-specific centers, Zika centers also would be obvious sites to conduct sorely needed translational research into the impact of Zika on the baby beyond ZiCS. Many national agencies, including the National Institutes of Health and the U.S. Centers for Disease Control and Prevention (CDC), still are synthesizing the research agenda for Zika. Research must include perinatal prevention, drug and vaccine development, as well as the longitudinal follow-up of the Zika-exposed baby, which should be a major agenda item.
Currently, Zika-exposed babies will continue to benefit from and participate in the established federally funded programs for care of children with developmental disorders, such as the early intervention programs established under the Individuals with Disabilities and Education Act (Public Law No. 94-142), part C and maternal and child services under Title V. However, as we have learned from the HIV epidemic, existing services are often not enough to serve large numbers of individuals needing multiple services. Coordination of services is complex, time-consuming and often overwhelming for many practicing pediatricians who are already burdened with so many other medical home responsibilities. These patients benefit from community resources and the existing systems of care but are served better in centers that focus on care of medically complex patients.
Pediatric healthcare systems are trying to catch up with this reality. The Center for Medicare and Medicaid Innovation (CMMI), in collaboration with 10 children’s hospitals, is funding demonstration programs for medically complex children. Many pediatric advocacy organizations have supported congressional action for better resources for medically complex children (Advancing Care for Exceptional Kids Act of 2015 (S. 298, H.R. 546 [ACE Kids Act]). In the case of Zika, there is an opportunity to work on a system of care enhancement before the epidemic hits us, instead of after the fact.
Because the U.S. population is largely naïve to the Zika virus, thousands of women of childbearing age are at risk for infection during pregnancy, which could lead to thousands of newborns terribly affected by the virus. We pediatricians need to make sure that Zika testing is available and accessible to all women of childbearing age—especially those who are pregnant.
As early in the HIV epidemic, we really do not have anything to offer to Zika-infected pregnant women other than counseling and the highest level of supportive services appropriate for affected babies. For now, preventive interventions do not exist, and they may not be available for a few years.
But, unlike the HIV and rubella stories, we now have an opportunity to be prepared when the outbreak arrives. We need to have pediatricians in every community who are “Zika champions,” prepared to work with the many pediatric specialists who must be available and involved with Zika-exposed and -infected babies.
The American Academy of Pediatrics (AAP) and the U.S. Centers for Disease Control & Prevention (CDC) are working together to provide support for pediatricians in the form of education and training. Such centralized planning is critical but cannot replace the absolute value of Zika champions who can coordinate services, implement recommendations in the field, advocate for resources for care, long-term follow-up and research for the Zika-exposed babies.
As Zika champions, pediatricians can advocate with their state legislatures for better services and more resources for affected babies. Zika champions also can help organize parent advocacy groups to approach not only state legislatures but also Congress. There would have been no Ryan White program without the advocacy of the affected community. Of course, working with the AAP leadership and legislative office would be critical.
Zika testing information is scarce at the moment. For example, investigators from Texas reported that only 3.1% of county health department and 5% of metropolitan health department web sites had testing information available. Also, information was available on fewer than 8 state web sites. And the CDC reports that only a quarter of the children with possible congenital Zika virus are receiving appropriate evaluation, suggesting that local efforts have yet to match the tremendous central efforts underway.
Central expert planning is critical for a successful response, but it is a “boots on the ground” approach that makes a proposed plan a success. The Government Accountability Office found that response to Zika was reactive. I suspect that when the outbreak actually hits, we also may find that the response was not pragmatic, that is, no local or regional infrastructure was proactively built.
Each state is different, each region is different, and each city is different. In addition to efforts by the AAP and the CDC, we will have to work with our local and state departments of health.
Just as all politics are local, responses to health threats, especially Zika, also must be local.