How These Healthcare Providers are Fighting a Rise in Congenital Syphilis
By Los Angeles Daily News | Sept. 29, 2022, 11:39 p.m.
Category: Events in the News, Health Care Equity, Health Care Innovation, Health Services, PP News, Sex Education, Sexual Health, Staff Stories, STD, STDs, STDs and Safer Sex, STI, STI Testing, This Is Health Care
As originally published by Los Angeles Daily News on Tuesday, September 27, 2022.
Dr. Christopher Ried is in a race against time, fighting a disease that can maim – a disease that, ultimately, can kill.
It was once contained. Now it has come roaring back, preying on the most vulnerable patients.
The menace? Congenital syphilis.
That’s why Ried – who oversees the HIV and sexually transmitted disease programs for the Orange County Health Care Agency – along with his nurse and another healthcare worker, found themselves traveling to a motel in Garden Grove last year. A pregnant woman and her partner who refused to come to his office were holed up there, so Reid and his team came to them to deliver needed penicillin injections.
Another time he conducted a telehealth appointment with a pregnant woman who had syphilis and was living near a storm drain south of Santa Ana.
If that’s what it takes to stop congenital syphilis infections, that’s what Reid – among the many health care providers and activists scrambling to stem the tide of rising infections – will do.
“We’ll go to women no matter where they are,” Ried says. “If someone is pregnant who needs to be evaluated, we will pick them up and bring them to the clinic and, in the worst-case scenario, we will take the clinic to them.”
Babies at Risk
As Ried explains, syphilis has been rising among men having sex with men in recent years. But the number of women acquiring the disease in Orange County is now increasing, alongside women across the state.
While syphilis in an adult could eventually lead to severe consequences, it can be easily treated long before that point. Congenital syphilis, however, is a different matter: It carries a high risk of stillbirth or birth defects that include blindness, deafness and skeletal deformities. The window for treatment is brief – no later than 30 days before delivery.
In Orange County there were no cases of congenital syphilis 10 years ago; last year there were 26, with six deaths.
“We thought things were going away in 2012, and something happened,” Ried says. “We don’t know what.”
This year, “We already have 19 babies born with congenital syphilis as of July 1. It seems to be a terrible year, much worse than last year.”
Similar surges are happening in Long Beach, San Bernardino County and Los Angeles County, which together saw 88 cases of congenital syphilis in 2019 – a 1,300 percent increase from 2012.
A Clever Foe
Until recently, syphilis was more associated with 19th-century artists and thinkers like Gauguin or Nietzsche. That’s because by the 1940s, penicillin had emerged as the remedy, and it still is. Yet, treatment can be elusive.
Some patients don’t realize they have the infection. In the medical world, syphilis has earned the nickname “the great imitator,” because its symptoms are easily confused with those of other illnesses. Doctors have been known to mistake the sores for genital warts.
Women who are most at risk can be hard to locate – disproportionately homeless – and less likely to have access to prenatal care. Another factor is substance abuse, which might be linked to multiple sexual partners. In Orange County, nearly half of mothers giving birth to infants with congenital syphilis from 2017 to 2021 used methamphetamine, or their partners did.
“We know that people who test positive are sexually active, sometimes engaging in anonymous sex,” says Dr. Shannon Connolly, associate medical director at Planned Parenthood of Orange and San Bernardino Counties. “Some are sex workers, taking part in survival sex or coerced sex.”
But not all. “In the last 10 years, people not considered to be in high-risk groups are coming back positive for syphilis. I recently had a patient who tested positive, was a married heterosexual woman from the middle class, with no risk factors that I could identify,” Connolly says.
Whatever her background, a patient commonly feels shame when she gets her diagnosis, which Connolly finds infuriating.
“I spend a lot of time talking to patients about how STIs are stigmatized and that’s not fair. It’s a very common experience that every person is at risk for,” Connolly says. “I tell them we’re going to treat it and reassure them that their health care providers are not going to stigmatize them.”
Planned Parenthood maintains a full-time syphilis case manager, and its policy is to invite every woman who comes to the clinic, whatever the reason – birth control, a routine pap smear – to get tested for syphilis.
Ried, meanwhile, is reaching out to the medical community, contacting neonatologists, obstetricians and labor and delivery units. He wants them to know that a new California law requires doctors to test a woman for syphilis twice during pregnancy and a third time upon delivery.
“When you say it’s written into the California Health and Safety Code, it makes all the difference in the world,” Ried says. “You have to do this, or you’re breaking the law.”
He also has put the heads of OC emergency rooms and mental health, drug treatment and homelessness programs on alert for the chance to steer high-risk patients into testing and treatment.
He’s advising lab directors on how to zero in on syphilis more quickly so that test results don’t come in after a woman has left the hospital with her baby, at which point she may be difficult to locate. He recommends that doctors treat a pregnant patient on the spot – without waiting for test results to come in – if she appears to have an active case of syphilis or said she’s had sex with an infected person.
Now 59, Ried has worked in STI and HIV medicine for his entire career, starting with an AIDS clinic in Hollywood in 1988. “I love infections,” he says, adding, “I love getting rid of infections and saving lives.”
Return of the ‘Old Diseases’
Congenital syphilis should not be a surprise. The number of syphilis cases in California rose 349 percent from 2009 to 2019, and gonorrhea went up 236 percent in the same decade.
“The old diseases are returning,” says Pearl Jemison-Smith, a former AIDS activist who founded Orange County’s Sexually Transmitted Infection Coalition in 2020. STIC is a loosely organized affiliation of public-interest health care providers, drug manufacturers, HIV and LGBTQ activists, sexual education specialists and university experts. The goal is to bring together advocates and practitioners so they don’t work in isolation but instead pool their knowledge.
Jemison-Smith launched STIC after reading about the rise in congenital syphilis and asked the county Health Care Agency how she could be of service. The answer she got was to foster communication, which she does mainly through emails and every other-month Zoom meetings of STIC.
She is a former nurse with a specialty in infectious diseases. At 84, she might be expected to enjoy a quiet retirement in her Garden Grove home, but she remains a warrior in the fight against STIs. She lost a son to AIDS in 2008.
“I had four children of my own,” Jemison-Smith says, “and when something happens to babies, that touches my heart.”
In Long Beach, where case numbers are comparatively low but the rate of infection is high, 29-year-old Emily Johnson is something of a detective.
As a supervisor of the city’s HIV-STI Surveillance Program, she works in disease investigation, overseeing a staff of trained health workers who track down people with STIs, both to get them treated and to identify past partners who may not know they are infected.
Her team’s work often begins when a lab result comes in that suggests a woman with a positive syphilis test is or might be pregnant. At that point, “They are our first priority,” Johnson said.
She then texts and calls the woman repeatedly, eventually going to her last known address if necessary. If she can get the woman on the phone or face to face, she must then deliver the bad news: Not only do you have syphilis, but your baby also is in danger.
“It’s a hard conversation to have,” Johnson acknowledges.
And yet there is also good news:
“You want to focus on next steps,” Johnson says, reminding her people that syphilis is curable, and congenital syphilis can be stopped if addressed in time. Like Ried, she loves her job, citing the satisfaction of seeing babies born without abnormalities after she or her staff arranged for their mothers to be treated during pregnancy.
Diverted, Depleted Resources
The kind of work Johnson does in STI investigation is one of the hardest hit by COVID, when resources for sexually transmitted disease detection were largely diverted to the pandemic. In addition, the shutdown made STI patients reluctant or unable to seek medical help, fueling transmission.
Even before COVID, however, STIs were on the rise. According to the medical journal The Lancet, U.S. syphilis rates in 2000 were at their lowest since 1941, declining 89.2 percent in the preceding decade.
“We were thinking it was within reach for a public health effort to eliminate syphilis. We had gotten numbers down so low,” says Connolly of Planned Parenthood.
So, what happened?
One theory is that shame keeps the problem hidden.
“I hope that will change over time,” Connolly says. “We need to make it clear that STIs are part of human existence, and we need to treat them and devote the resources.”
The other explanation for the STI reversal comes down to simple neglect and underfunding, according to Dr. Jeffrey Klausner, University of Southern California professor of medicine, infectious diseases and public health.
“There has been continued defunding of sexual health services and programs that includes public health nurses and field staff who follow up on women to see if they’re getting treated,” he told The Lancet. Rising rates of syphilis is a marker of a failed public health system, Klausner noted in the 2022 article. “It is easily detected, and treatable, and congenital syphilis can be prevented by just treating the pregnant woman. But you get the public health you pay for.”