Rise of syphilis in the US reflects neglect of long-term public health funding : Shots - Health News - NPR
Mai Yang, a communicable disease specialist, searches for Angelica, a 27 year-old pregnant woman who tested positive for syphilis, in order to get her treated before she delivers her baby. Talia Herman for ProPublica
When Mai Yang is looking for a patient, she travels light. She dresses deliberately — not too formal, so she won't be mistaken for a police officer; not too casual, so people will look past her tiny 4-foot-10 stature and youthful face and trust her with sensitive health information. Always, she wears closed-toed shoes, "just in case I need to run."
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Yang carries a stack of cards issued by the Centers for Disease Control and Prevention that show what happens when the Treponema pallidum bacteria invades a patient's body. There's a photo of an angry red sore on a penis. There's one of a tongue, marred by mucus-lined lesions. And there's one of a newborn baby, its belly, torso and thighs dotted in a rash, its mouth open, as if caught midcry.
It was because of the prospect of one such baby that Yang found herself walking through a homeless encampment on a blazing July day in Huron, Calif., an hour's drive southwest of her office at the Fresno County Department of Public Health.
She was looking for a pregnant woman named Angelica, whose visit to a community clinic had triggered a report to the health department's sexually transmitted disease program. Angelica had tested positive for syphilis. If she was not treated, her baby could end up like the one in the picture or worse — there was a 40% chance the baby would die.
Yang knew, though, that if she helped Angelica get treated with three weekly shots of penicillin at least 30 days before she gave birth, it was likely that the infection would be wiped out and her baby would be born without any symptoms at all. Every case of congenital syphilis, when a baby is born with the disease, is avoidable. Each is considered a "sentinel event," a warning that the public health system is failing.
The alarms are now clamoring. In the United States, more than 129,800 syphilis cases were recorded in 2019, double the case count of five years prior. In the same time period, cases of congenital syphilis quadrupled: 1,870 babies were born with the disease; 128 died. Case counts from 2020 are still being finalized, but the CDC has said that reported cases of congenital syphilis have already exceeded the prior year. Black, Hispanic and Native American babies are disproportionately at risk.
Yang drives to Huron, a rural town an hour outside of Fresno, Calif., in search of Angelica. Patients in rural areas like Huron often have less access to care. Talia Herman for ProPublica
There was a time, not too long ago, when CDC officials thought they could eliminate the centuries-old scourge from the United States, for adults and babies. But the effort lost steam and cases soon crept up again.
Syphilis is not an outlier. The United States goes through what former CDC director Dr. Tom Frieden calls "a deadly cycle of panic and neglect" in which emergencies propel officials to scramble and throw money at a problem — whether that's Ebola, Zika or COVID-19. Then, as fear ebbs, so does the attention and motivation to finish the task.
The last fraction of cases can be the hardest to solve, whether that's eradicating a bug or getting vaccines into arms, yet too often, that's exactly when political attention gets diverted to the next alarm. The result: The hardest to reach and most vulnerable populations are the ones left suffering, after everyone else looks away.
'This bacteria is still in your body'
Yang first received Angelica's lab report on June 17. The address listed was a P.O. box, and the phone number belonged to her sister, who said Angelica was living in Huron. That was a piece of luck: Huron is tiny; the city spans just 1.6 square miles. On her first visit, a worker at the Alamo Motel said she knew Angelica and directed Yang to a nearby homeless encampment. Angelica wasn't there, so Yang returned a second time, bringing one of the health department nurses who could serve as an interpreter.
Yang drove to Huron knowing that if she helped Angelica get treated with three weekly shots of penicillin at least 30 days before she gave birth, it was likely that her baby would be born without any symptoms of the disease. Talia Herman for ProPublica
Left: Communicable disease specialists Yang (left) and Hou Vang walk to the Fresno County Department of Public Health in Fresno. Right: In Huron, Yang looked for Angelica near a former homeless encampment where she used to live. Talia Herman for ProPublica
They made their way to the barren patch of land behind Huron Valley Foods, the local grocery store, where people took shelter in makeshift lean-tos composed of cardboard boxes, scrap wood and scavenged furniture, draped with sheets that served as ceilings and curtains. Yang stopped outside one of the structures, calling a greeting.
"Hi, I'm from the health department, I'm looking for Angelica."
The nurse echoed her in Spanish.
Angelica emerged, squinting in the sunlight. Yang couldn't tell if she was visibly pregnant yet, as her body was obscured by an oversized shirt. The two women were about the same age: Yang 26 and Angelica 27.
Yang led her away from the tent, so they could speak privately. Angelica seemed reticent, surprised by the sudden appearance of the two health officers. "You're not in trouble," Yang said, before revealing the results of her blood test. (NPR and ProPublica chose not to use Angelica's last name to protect her privacy.)
Angelica had never heard of syphilis.
"Have you been to prenatal care?"
Angelica shook her head. The local clinic had referred her to an obstetrician in Hanford, a 30-minute drive away. She had no car. She also mentioned that she didn't intend to raise her baby; her two oldest children lived with her mother, and this one likely would, too.
Yang pulled out the CDC cards, showing them to Angelica and asking if she had experienced any of the symptoms illustrated. No, Angelica said, her lips pursed with disgust.
"Right now you still feel healthy, but this bacteria is still in your body," Yang pressed. "You need to get the infection treated to prevent further health complications to yourself and your baby."
The community clinic was just across the street. "Can we walk you over to the clinic and make sure you get seen so we can get this taken care of?"
Angelica demurred. She said she hadn't showered for a week and wanted to wash up first. She said she'd go later.
Yang tried once more to extract a promise: "What time do you think you'll go?"
"Today, for sure."
Missed opportunities to eliminate a curable 'scourge'
Syphilis is called The Great Imitator: It can look like any number of diseases. In its first stage, the only evidence of infection is a painless sore at the bacteria's point of entry. Weeks later, as the bacteria multiplies, skin rashes bloom on the palms of the hands and bottoms of the feet. Other traits of this stage include fever, headaches, muscle aches, sore throat and fatigue.
These symptoms eventually disappear and the patient progresses into the latent phase, which betrays no external signs. But if left untreated, after a decade or more, syphilis will reemerge in up to 30% of patients, capable of wreaking horror on a wide range of organ systems. Dr. Marion Sims, president of the American Medical Association in 1876, called it a "terrible scourge, which begins with lamb-like mildness and ends with lion-like rage that ruthlessly destroys everything in its way."
Yang carries syphilis cards issued by the Centers for Disease Control and Prevention that she shares with people to show them what syphilis symptoms, like lesions on a tongue or a dotted rash on a baby, can look like. Talia Herman for ProPublica
The corkscrew-shaped bacteria can infiltrate the nervous system at any stage of the infection. Yang is haunted by her memory of interviewing a young man whose dementia was so severe that he didn't know why he was in the hospital or how old he was. And regardless of symptoms or stage, the bacteria can penetrate the placenta to infect a fetus. Even in these cases the infection is unpredictable: Many babies are born with normal physical features, but others can have deformed bones or damaged brains, and they can struggle to hear, see or breathe.
From its earliest days, syphilis has been shrouded in stigma. The first recorded outbreak was in the late 15th century, when Charles VIII led the French army to invade Naples. Italian physicians described French soldiers covered with pustules, dying from a sexually transmitted disease. As the affliction spread, Italians called it the French Disease. The French blamed the Neopolitans. It was also called the German, Polish or Spanish disease, depending on which neighbor one wanted to blame. Even its name bears the taint of divine judgement: It comes from a 16th-century poem that tells of a shepherd, Syphilus, who offended the god Apollo and was punished with a hideous disease.
By 1937 in America, when former Surgeon General Thomas Parran wrote the book Shadow on the Land, he estimated some 680,000 people were under treatment for syphilis; about 60,000 babies were being born annually with congenital syphilis. There was no cure, and the stigma was so strong that public health officials feared even properly documenting cases.
Thanks to Parran's ardent advocacy, Congress in 1938 passed the National Venereal Disease Control Act, which created grants for states to set up clinics and support testing and treatment. Other than a short-lived funding effort during World War I, this was the first coordinated federal push to respond to the disease.
Around the same time, the Public Health Service launched an effort to record the natural history of syphilis. Situated in Tuskegee, Alabama, the infamous study recruited 600 black men. By the early 1940s, penicillin became widely available and was found to be a reliable cure, but the treatment was withheld from the study participants. Outrage over the ethical violations would cast a stain across syphilis research for decades to come and fuel generations of mistrust in the medical system among Black Americans that continues to this day.
An exam room in the Fresno County Department of Public Health displays info packets about syphilis. Talia Herman for ProPublica
With the introduction of penicillin, cases began to plummet. Twice, the CDC has announced efforts to wipe out the disease — once in the 1960s and again in 1999.
In the latest effort, the CDC announced that the United States had "a unique opportunity to eliminate syphilis within its borders," thanks to historically low rates, with 80% of counties reporting zero cases. The concentration of cases in the South "identifies communities in which there is a fundamental failure of public health capacity," the agency noted, adding that elimination — which it defined as fewer than 1,000 cases a year — would "decrease one of our most glaring racial disparities in health."
'The bugs don't go away'
Two years after the campaign began, cases started climbing, first among gay men and later, heterosexuals. Cases in women started accelerating in 2013, followed shortly by increasing numbers of babies born with syphilis. The reasons for failure are complex; people relaxed safer sex practices after the advent of potent HIV combination therapies, increased methamphetamine use drove riskier behavior and an explosion of online dating made it hard to track and test sexual partners, according to Dr. Ina Park, medical director of the California Prevention Training Center at the University of California San Francisco.
But federal and state public health efforts were hamstrung from the get-go. In 1999, the CDC said it would need about $35 million to $39 million in new federal funds annually for at least five years to eliminate syphilis. The agency got less than half of what it asked for, according to Jo Valentine, former program coordinator of the CDC's Syphilis Elimination Effort. As cases rose, the CDC modified its goals in 2006 from 0.4 primary and secondary syphilis cases per 100,000 in population to 2.2 cases per 100,000. By 2013, as elimination seemed less and less viable, the CDC changed its focus to ending congenital syphilis only.
Yang meets with a patient who has come to the public health department for a penicillin shot. Talia Herman for ProPublica
Since then, funding has remained anemic. From 2015 to 2020, the CDC's budget for preventing sexually transmitted infections grew by 2.2%. Taking inflation into account, that's a 7.4% reduction in purchasing power. In the same period, cases of syphilis, gonorrhea and chlamydia — the three STDs that have federally funded control programs — increased by nearly 30%.
"We have a long history of nearly eradicating something, then changing our attention, and seeing a resurgence in numbers," said David Harvey, executive director of the National Coalition of STD Directors. "We have more congenital syphilis cases today in America than we ever had pediatric AIDS at the height of the AIDS epidemic. It's heartbreaking."
Adriane Casalotti, chief of government and public affairs at the National Association of County and City Health Officials, warns that the U.S. should not be surprised to see case counts continue to climb. "The bugs don't go away," she said. "They're just waiting for the next opportunity, when you're not paying attention."
'You can't save everybody'
Yang waited until the end of the day, then called the clinic to see if Angelica had gone for her shot. She had not. Yang would have to block off another half day to visit Huron again, but she had three dozen other cases to deal with.
States in the South and West have seen the highest syphilis rates in recent years. In 2017, 64 babies in Fresno County were born with syphilis at a rate of 440 babies per 100,000 live births — about 19 times the national rate. While the county had managed to lower case counts in the two years that followed, the pandemic threatened to unravel that progress, forcing STD staffers to do COVID-19 contact tracing, pausing field visits to find infected people and scaring patients from seeking care. Yang's colleague handled three cases of stillbirth in 2020; in each, the woman was never diagnosed with syphilis because she feared catching the coronavirus and skipped prenatal care.
As a communicable disease specialist with the public health department, Yang meets patients whenever and wherever they are available. She informs them about syphilis, gathers names of sex partners and encourages treatment. Talia Herman for ProPublica
Yang, whose caseload peaked at 70 during a COVID-19 surge, knew she would not be able handle them all as thoroughly as she'd like to. "When I was being mentored by another investigator, he said: 'You're not a superhero. You can't save everybody,'" she said. She prioritizes men who have sex with men, because there's a higher prevalence of syphilis in that population, and pregnant people, because of the horrific consequences for babies.
The job of a disease intervention specialist isn't for everyone: It means meeting patients whenever and wherever they are available — in the mop closet of a bus station, in a quiet parking lot — to inform them about the disease, to extract names of sex partners and to encourage treatment. Patients are often reluctant to talk. They can get belligerent, upset that "the government" has their personal information or shattered at the thought that a partner is likely cheating on them. Salaries typically start in the low $40,000s.
Jena Adams, Yang's supervisor, has worked in public health since the early 1990s. Talia Herman for ProPublica
Jena Adams, Yang's supervisor, has eight investigators working on HIV and syphilis. In the middle of 2020, she lost two and replaced them only recently. "It's been exhausting," Adams said.
She has only one specialist who is trained to take blood samples in the field, crucial for guaranteeing that the partners of those who test positive for syphilis also get tested. Adams wants to get phlebotomy training for the rest of her staff, but it's $2,000 per person. The department also doesn't have anyone who can administer penicillin injections in the field; that would have been key when Yang met Angelica. For a while, a nurse who worked in the tuberculosis program would ride along to give penicillin shots on a volunteer basis. Then he, too, left the health department.
Much of the resources in public health trickle down from the CDC, which distributes money to states, which then parcel it out to counties. The CDC gets its budget from Congress, which tells the agency, by line item, exactly how much money it can spend to fight a disease or virus, in an uncommonly specific manner not seen in many other agencies. The decisions are often politically driven and can be detached from actual health needs.
When the House and Senate appropriations committees meet to decide how much the CDC will get for each line item, they are barraged b...
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