It takes more than penicillin to end a syphilis epidemic

You can judge the state of the nation’s syphilis epidemic by LaRhonda Coleman’s commute to and from Shreveport, Louisiana.

She often listens to the radio — uplifting songs, usually — as she makes the 40-minute drive down I-20 to Shreveport, where over a quarter of the population lives in poverty. Here, about 100 people are diagnosed with syphilis each year. Coleman is a case manager for the Louisiana Department of Health, doing all she can to help vulnerable women get the treatment they desperately need.

Some evenings, she drives home listening to talk radio, letting the news pundits take her mind away from thoughts of work. But on particularly hard days, she keeps the radio off and lets the pine trees lining the freeway drift by in silence.

“Once someone falls out of care that we worked very hard to bring into care — and once they have, you know, resisted all efforts and just made up in their mind that they’re not going to comply, that — that’s difficult,” Coleman says. “That’s a difficult, difficult day.”

But lately, there have been fewer difficult days, she says. Since the Louisiana Department of Health began an innovative case-management project in 2018, cases of congenital syphilis passed from mother to child during pregnancy are declining in Louisiana: from 59 cases to 46 cases, a 22% drop from 2017 to 2018, despite an increase in cases nationally.

By focusing solely on women with syphilis, case managers in Shreveport and Baton Rouge not only treat syphilis, but also address their patients’ broader needs, offering a ray of hope in a darkening landscape.

Across the U.S., cases of congenital syphilis increased 40% from 2017 to 2018, according to Dr. Virginia Bowen, an epidemiologist at the U.S. Centers for Disease Control and Prevention.

“What’s especially concerning to us is that the most tragic consequence, which is stillbirth, increased” from 77 newborn deaths nationally in 2017 to 94 in 2018, Bowen says, referring to a recent CDC report. Almost every state in the U.S., but not Louisiana, saw an increase in congenital syphilis cases, she adds, noting that the epidemic is affecting all races and ethnicities.

Louisiana ranks among the highest states in the nation for congenital syphilis, but the most prevalent forms of the disease across the nation are primary and secondary syphilis, in which the bacterial infection is transmitted by sexual contact with an infected sore. After initial infection, syphilis develops through several stages. Painless, firm sores in or around the genitals, anus or mouth generally mark the first, “primary” phase of the infection and can easily go unnoticed. If left untreated, a secondary stage, with skin rashes, fever and fatigue, may develop.

Syphilis can be stopped at any stage with penicillin. So in theory, ending the epidemic should be as simple as treating the disease during routine, legally required prenatal syphilis tests. In reality, that’s simply not working.

In 2017, the Louisiana Department of Health reported 59 cases of congenital syphilis — part of the 935 cases of congenital syphilis in the United States that year. And nationally, the trend is rising: a 165% increase since 2015, according to the CDC.

Pinpointing the reasons why is difficult, Bowen says. There are some “classic risk factors” that have been reported alongside women’s syphilis cases. For example, methamphetamine use, a classical risk factor for spreading syphilis, has more than doubled since 2013 among women with primary or secondary syphilis, the CDC reports. But Bowen notes that a lot of what we know about risk factors for congenital syphilis comes from the last epidemic, which occurred about 30 years ago.

“There is a question right now as to whether or not those risk factors are really still holding true,” she adds. Many important traditional risk factors — whether a woman was recently incarcerated, if she’s had sex with a man that has sex with other men, and whether she has traded sex for money — are actually holding steady even as syphilis cases continue to rise, according to Bowen.

One possible explanation for the increase is that the budgets of many state-run health departments have decreased. In fact, about one-fifth of the local health departments across the nation had budget cuts in 2017, according to a national survey. And over half of the state-run sexually transmitted disease prevention programs in the U.S. have seen reduced funding in recent years, according to the CDC. At the federal level, funding for this kind of prevention work has been relatively stable, but even stagnant budgets can make intervention difficult.

Traditional intervention begins when a healthcare worker reports a positive syphilis test from a patient and relays patient contact information to the local or state health department, explains Miguel Cervantes, an epidemiology manager at the Texas Department of State Health Services. The health department asks the healthcare worker about any particular symptoms or complications, and then the case goes to a “disease intervention specialist.”

“These individuals are really the core of the HIV/STD program,” Cervantes says. They go out, inform patients that they are infected, provide treatment, investigate who else needs treatment, and work with patients to reduce the risk of reinfection for syphilis and other sexually transmitted diseases.

“We really try to talk and understand where this person’s coming from, and we try taking steps to where they can control their sexual health,” Cervantes says.

But in some cases, that may not be enough — especially in places where affected populations already face other issues, such as lack of access to stable housing, transportation and medical care. To overcome these challenges, the Louisiana Department of Health created the “case manager” role to bring in-depth care to women of childbearing age, between 14 and 45 years old. These case managers work solely with women with syphilis and generally have fewer patients, giving them more time to build relationships than traditional disease intervention specialists.

“What we were finding through some of our work, is that sometimes we were offering services through traditional health department, you know, hours — it’s just not always the best way to reach clients,” says Chaquetta Johnson, a director at the Louisiana Department of Health. “There were issues with transportation. There were issues with patients becoming infected later in pregnancy, or re-infected after they had been effectively treated earlier in the pregnancy.”

So now, Louisiana’s case managers — including LaRhonda Coleman — not only inform women that they have syphilis and offer treatment, but also arrange transportation and coach them through pregnancy. Sometimes Coleman helps women make even bigger changes, like finding permanent housing.

To provide syphilis treatment, healthcare workers often meet women where they’re at. [Credit: CKSegarra | CC BY-SA 4.0]

“This particular young lady came to our attention and she needed to be treated — pregnant at the time,” Coleman recalls. “Her family, they were living in a motel. That was their house.” And this particular motel was known for drug use, she says.

The family needed a better place to live, so Coleman helped the family get a housing voucher along with her syphilis treatment. After about six weeks the family got a permanent home. Along the way, Coleman helped from the sidelines, doing little things like pointing them towards the Renesting Project, to help them furnish their new home.

“I am able to build up a very strong bond with these women,” Coleman explains, “walking them through the pregnancy — sometimes holding their hands.” Her goal is to make sure these mothers are well-equipped to care for their babies.

“We talk about a full gamut of things. We talk about breastfeeding. We talk about things to do to reduce stress during pregnancy,” she says, “and I think that’s what helps foster that relationship.”

So maybe the key to solving the syphilis epidemic is by building bonds with patients — one case at a time. It certainly worked for the woman Coleman met in the motel: “She was able to get into the house and she had a healthy baby girl, and I’m able to see her, you know when she comes to the health unit for various services,” Coleman says.

The problem with intensive case management is that it is expensive. To hire Coleman and one additional case manager, the Louisiana Department of Health used money from a one-time $550,000 grant from the CDC, according to Chaquetta Johnson. Although hiring and supporting a case manager costs the department about as much as hiring a traditional disease intervention worker, local and state funding isn’t enough to support the work, she says. Importantly, these case workers only focus on syphilis, so to address other sexually transmitted diseases, the department still has to employ other, more traditional intervention workers as well.

Since the initial grant ran out at the end of 2018, the case management program has relied on supplemental funding from the CDC’s Prevention and Control for Health Departments program, a federal initiative that distributed over $92 million to health departments across the U.S. and its territories in 2019. These federal funds support various syphilis prevention programs across the U.S., and Louisiana is not the only state trying a novel approach to prevention. California, for example, is focusing on reducing syphilis by raising awareness among the homeless community and working to implement syphilis screening during emergency room visits, according to Dr. James Watt from the California Department of Public Health.

Even the most attentive case management programs, though, don’t always work. Some women continue to fall through the cracks, says Coleman.

“So dealing with that — oh, it’s — that’s so — that’s still a process that I’m learning,” Coleman says, “but I try not to let it get the best of me because we have, I have, so many others that need, you know, the positive energy.”