Congenital syphilis, although 100% preventable, is a health crisis

The U.S. is currently facing a public health crisis — one that is on the rise at an alarming rate, has devastating consequences, and is 100% preventable. And that’s congenital syphilis (CS).

Mothers with syphilis can transmit it to their babies during pregnancy or at birth. Approximately 40% of babies born to patients with untreated syphilis are stillborn or die from the infection as a newborn.

In 2019, 128 babies died due to CS. Babies with CS who do survive need to be treated right away, or they can develop serious lifelong health problems, including deformed bones, severe low blood count, enlarged liver and spleen, meningitis, brain and nerve problems (such as blindness and deafness), jaundice, meningitis, and skin rashes.

The treatment for syphilis in the pregnant mother is simple: penicillin at least a month before the baby is born

In 2020, more than 2,000 cases of congenital syphilis were reported in the United States, according to the CDC. That’s the highest number of cases reported in a single year since 1994. This is a rapid turnaround as, just two decades earlier, the CDC reported that the rate of primary and secondary syphilis was the lowest since reporting began in 1941.

A story I read published almost a year ago about how preventable CS is, still haunts me. It also keeps me motivated to solve this public health crisis, one that can be easily tackled with timely treatment, enabled by health information exchange (HIE) sharing and real-time alerts between hospitals and public health systems.

Treatment and technology
The treatment for syphilis in the pregnant mother is simple: penicillin at least a month before the baby is born. If a baby is born with CS, prompt treatment and follow-up care can reduce the likelihood they will develop severe health problems. However, most women who give birth to babies with CS receive either minimal or no prenatal care, leaving their babies at risk. We can change that.

Proactive opportunities for prevention include early maternal screening and adequate treatment, but ensuring timely communication of information between public health agencies and health care providers is a major challenge, often resulting in inadequate treatment prior to and after delivery. Pregnant individuals facing homelessness or other social challenges may be lost to follow-up, which means lost opportunities for early treatment and medical intervention.

Health data tools also provide access to patient clinical data, including labs, progress notes, and medications and treatment.

The San Bernardino County Department of Public Health (SBCDPH) has worked to close CS care gaps and connect pregnant mothers to needed treatment through use of real-time hospital admission, discharge, and transfer (ADT) notifications received through the statewide health data utility.

These notifications are sent to local public health teams when pregnant patients with positive syphilis results (required to be reported to local health jurisdictions) are admitted, including for labor and delivery, which allows the public health department to coordinate testing and treatment right away with hospital care teams for the mother and newborn prior to the discharge.

Because of the real-time notifications, versus traditional slower methods like fax or email, public health nurses no longer needed to call local hospitals to track deliveries, saving valuable time and reducing missed opportunities for treatment. Health data tools also provide access to patient clinical data, including labs, progress notes, and medications and treatment. This clinical information speeds up care coordination and delivers supporting documentation. The results in San Bernardino have been significant, allowing them to quickly turn the tide on CS cases and spare residents of their region from immense suffering.

Racism and stigma in medical care, poverty, transportation issues, and understaffed public health departments have all likely contributed to both the rise of CS and clear inequities in who is affected. CS rates have soared disproportionately in women of color and those struggling with substance use disorders, housing, and other social determinants of health. HIEs can serve as a health data utility, providing real time alerting and essential health information sharing across hospital and public healthcare teams when a patient with limited or no prior care presents at the hospital.

Health data utilities
In 1937, we had no cure for CS. Today, we do — and we have the health data utility model to support healthcare providers around the country in reaching pregnant women diagnosed with the condition, before they give birth and pass it on to their newborns.

We can turn the tide on this crisis, combating health inequity, and improving health outcomes. And, we should also use this CS example to further empower (and fund) the work of public health organizations in these kinds of life-changing, data-powered intervention programs.
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Editor’s Note: Mimi Hall, MPH, is vice president of public health innovation at Manifest MedEx, California’s largest nonprofit health data network. She has served as a local public health director in California since 2005 in Sierra, Plumas, Yolo, and Santa Cruz counties in California.