The US is currently facing a public health crisis – one that is growing at an alarming rate, has devastating consequences, and is 100% preventable. And this is congenital syphilis (CS).
Mothers with syphilis can pass 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 newborns.
In 2019, 128 babies died due to CS. Babies with CS who survive must be treated immediately or they can develop serious lifelong health problems, including deformed bones, severely low blood count, enlarged liver and spleen, meningitis, brain and nerve problems (such as blindness and deafness), jaundice, meningitis and skin rashes.
The treatment of syphilis in a 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. This is the highest number of cases reported in one year since 1994. This is a rapid turnaround, since just two decades earlier the CDC reported that rates of primary and secondary syphilis were 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 motivates me to solve this public health crisis, which can be easily overcome 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 of syphilis in a 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 chance of the baby developing serious 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 prevention options 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 leading to inadequate treatment before and after birth. Pregnant individuals facing homelessness or other social challenges may be lost to follow-up, meaning lost opportunities for early treatment and medical intervention.
Health data tools also provide access to clinical patient data, including labs, progress notes, and medications and treatments.
The San Bernardino County Department of Public Health (SBCDPH) is working to close gaps in CS care and connect pregnant mothers with needed treatment by using real-time Hospital Admission, Discharge and Transfer (ADT) notifications received through the state health data utility.
These notifications are sent to local public health teams when pregnant patients with positive results for syphilis (required to be reported to local health jurisdictions) are admitted, including for labor and delivery, allowing the public health department to coordinate testing and treatment immediately with the hospital’s maternal and newborn care teams before discharge.
Thanks to real-time notifications, compared to traditional slower methods such as fax or email, public health nurses no longer need to call local hospitals to track supplies, saving valuable time and reducing missed treatment opportunities. Health data tools also provide access to clinical patient data, including labs, progress notes, and medications and treatments. This clinical information expedites care coordination and provides supporting documentation. The results in San Bernardino were significant, allowing them to quickly turn the tide of CS cases and save the residents of their region from immense suffering.
Racism and stigma in medical care, poverty, transportation problems, and understaffed public health departments likely contributed to both the rise of CS and the stark disparities in who is affected. CS levels are disproportionately elevated 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 aid, providing real-time alerts and sharing of critical health information between hospital and community health teams when a patient with limited or no prior care presents to the hospital.
Health Data Utilities
In 1937 we had no cure for CS. Today, we do—and we have the model to use health data to help health care providers across the country reach pregnant women diagnosed with the disease before they give birth and pass it on to their newborns.
We can turn the tide of this crisis by tackling health inequities and improving health outcomes. Furthermore, we should use this example of CS to empower (and fund) the work of public health organizations in these kinds of life-changing, data-driven intervention programs.
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 California Public Health Director since 2005 in Sierra, Plumas, Yolo and Santa Cruz counties in California.