The Tuskegee Syphilis Study will always be a black mark on American medicine. Designed to record the natural history of untreated syphilis in a population of illiterate African American men in rural Alabama, it continued for 25 years after penicillin became widely available and an accepted cure for the disease. Participants were deceived into believing that they were receiving effective treatment and never informed that they had the option of leaving the study. Although the ethics of these practices were occasionally questioned, the study did not end until it had received widespread negative publicity and Congressional hearings had been called.
In 1972, the last year of the Tuskegee study, I hadn't been born yet. But when I was a medical student doing my Internal Medicine clerkship in early 2000, an older African American man was admitted to our hospital service with memory loss, confusion and difficulty walking and was eventually diagnosed with tertiary neurosyphilis. Based on what he told me about his sexual history and prior symptoms (genital ulcers, rashes, muscle and joint pains), he had likely been infected decades before. Though he was a U.S. citizen by birth, he did not have a family physician and had rarely received health care due to not having insurance or the ability to pay. I don't remember what happened after we started penicillin, but much of the damage already done to his nervous system was irreversible. This patient's illness wasn't quite as outrageous as doctors knowingly withholding antibiotics for decades, but I have little doubt that it could have turned out differently if he had had access to primary care earlier in his life.
Last month, the Centers for Disease Control and Prevention (CDC) announced that the number of reported cases of congenital syphilis in the U.S. rose from 362 in 2013 to 918 in 2017, paralleling increases in syphilis infections in reproductive-age women during this time period. From 2016 to 2017, congenital syphilis cases rose from 16 to 23 per 100,000 live births. Although two-thirds of affected infants have no symptoms at birth, congenital syphilis is associated with increased neonatal mortality and a variety of early (through 48 months of age) and late complications.
The first line of prevention against congenital syphilis is screening for syphilis in all pregnant women at the first prenatal visit, a well-established standard of care that the U.S. Preventive Services Task Force (USPSTF) recently reaffirmed. Although some cases occur in infants whose mothers receive no prenatal care, about one-third of women who delivered a baby with congenital syphilis in 2016 were screened during their pregnancies.
The CDC, the American Academy of Pediatrics, and the American College of Obstetricians and Gynecologists all recommend repeating syphilis screening in women at high risk for syphilis at around 28 weeks of gestation and at time of delivery. Women at high risk include those living in higher-prevalence communities or geographic areas; those living with HIV infection; those with a history of incarceration or commercial sex work; and those exposed to a sexual partner with confirmed syphilis infection. Early penicillin treatment of infected pregnant women reduces the risk of congenital syphilis.
It is alarming that nearly a thousand American babies born last year were afflicted with congenital syphilis. Medically speaking, preventing this condition through detection and treatment of syphilis is straightforward. This is a population health failure, resulting from an underfunded public health infrastructure and a fragmented health system that makes it hard for women at high risk to access timely prenatal and primary care. Our country can do much better.
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Parts of this post first appeared on the AFP Community Blog.