Rates of congenital syphilis — which can cause miscarriages, stillbirths and severe birth defects — are rising in the United States, and the number of babies infected with syphilis during pregnancy is now the highest in decades.
Health experts are sounding the alarm, pushing for better education, testing and access to health care, and some states with the most cases of congenital syphilis are beginning to respond to the crisis.
"Every case of congenital syphilis that we see is an absolute, shameful failure of public health because it is completely preventable," said Khalil Ghanem, deputy director of education and interim chief at the division of infection diseases at Johns Hopkins Bayview Medical Center. "We in the United States, a very wealthy country, should not have the rates of congenital syphilis that we have. It's a scandal."
Curable sexually transmitted diseases, in general, are on the rise around the world. The World Health Organization recently said that there are more than 1 million new sexually transmitted infections every day across the globe.
In the United States, congenital syphilis, which had been declining from 2008 to 2012, has been sharply and steadily rising since 2013. By 2017, there were more than 900 reported cases, causing more than 60 stillbirths and more than a dozen deaths, according to the Centers for Disease Control and Prevention.
Congenital syphilis is easily preventable when pregnant women are properly screened for syphilis during their pregnancies and given a dose of antibiotics to treat it. "The trouble is, we're just not preventing it," said Virginia Bowen, an epidemiologist in the CDC's Division of STD Prevention.
Bowen said an increasing number of pregnant women are either not being tested and treated early enough in their pregnancies, or they are acquiring the STD after they have already been screened for it.
And those with untreated syphilis may pass it on to their babies. According to the CDC, as many as 40% of babies born to mothers who have the disease may be stillborn or die soon after birth. Other babies may be born prematurely or with a low birth weight, have severe anemia, an enlarged liver and spleen, bone deformities or meningitis.
However, experts say, many babies may have no symptoms at all at birth, and the test for the disease isn't reliable in newborns. Only five states require testing of the mother at the time of delivery, and eight others require it if a woman is at high risk of infection. If the mother tests positive, both the mother and newborn are treated.
Babies who are not treated for the disease may go on to develop deafness or blindness, though experts say it is rare because physicians, particularly in high-risk communities, usually treat babies suspected to be infected.
"There's a systems failure somewhere," said Bowen. "It's either at the health-care level or public-health level but somehow we are failing these women."
Public health authorities say the rising rate of congenital syphilis reflects a rising number of cases of syphilis in the adult communities. And the contributing factors that limit pregnant women's access to proper prenatal care are complex — including mental illness, drug abuse, poverty and the stigma of STDs.
The highest rate of congenital syphilis cases has been in Louisiana, where the rate is four times the national average. The state reported 59 cases in 2017, a 23% increase from the previous year, according to data from the state's health department.
John Vanchiere, vice chairman for pediatric research at Louisiana State University Health Shreveport, said his team evaluates two to four babies per month for congenital syphilis. In the vast majority of cases, Vanchiere said, pregnant women are screened early in their pregnancies and either test negative or positive and are successfully treated for the infection, but then acquire syphilis later in the pregnancy.
Vanchiere said with proper medical intervention, the prognosis for babies who survive is "very good." But it is "heartbreaking when an infant dies," he said. "Mothers and fathers, especially when there is infectious disease transmission to the baby, often carry a lot of guilt about that because these are preventable diseases."
Louisiana and four other states with the most cases of congenital syphilis — California, Texas, Florida and Arizona — account for 70% of cases in the nation; the highest per capita rates after Louisiana are in Nevada, California, Texas and Florida.
But in Louisiana, preliminary numbers for 2018 show a 22% drop in the number of cases of congenital syphilis — a drop that public health authorities say comes after the implementation of policies and programs to prevent infection. For example, in 2014, state health officials worked with lawmakers to pass state legislation requiring women to be screened in both the first and third trimesters, as well as at the time of delivery, to help determine whether the newborn should be treated. Most states laws require testing in the first trimester, but only a few other states call for testing at all stages.
In 2016, Louisiana assembled review boards to examine all cases of congenital syphilis across the state and determine which ones could have been prevented and how. Since then, Louisiana has reviewed 178 cases, according to the CDC, which gave the state a supplemental grant for prevention.
Louisiana has assigned case managers in two high-risk regions of the state to act as liaisons between doctors and patients, assisting women throughout their pregnancies and helping them and their partners access the proper STD care. Public health nurses in several regions make contact with pregnant women who have been diagnosed with syphilis and offer to make house calls to administer antibiotics. DeAnn Gruber, director of the Bureau of Infectious Diseases for the Louisiana Department of Health, said the efforts send the message that "this is a very urgent health-care condition that needs to be taken care of."
In 2017, Nevada saw 21 cases of congenital syphilis, at a rate of 57.9 per 100,000 live births.
That same year in California, 281 babies were born with congenital syphilis, including 30 who were stillborn, marking a rise for the fifth consecutive year, according to state and federal data. Texas reported 176 cases, and state health authorities expect the 2018 numbers to be even higher. There were 93 cases in Florida.
Arizona, which is ranked sixth in the country per capita, has seen a significant increase in the number of congenital syphilis cases. In 2017, the state reported 31 cases — nearly double than the year before. That number nearly doubled again last year and, so far in 2019, there have been 55 cases; one of the babies has died. The Arizona Department of Health Services posted an alert warning that medical providers "are seeing the largest increase of syphilis cases in women and newborns."
Bowen, with the CDC, said "the situation we have now is an unacceptable one."
"Given how preventable these cases are with appropriate testing and treatment and the really effective antibiotics we have today, we shouldn't be here," she said. The United States was able to get syphilis under control after an epidemic decades ago, she noted, which "gives me hope that we can do this again."