More babies in the U.S. are being born with syphilis than at any time in the last 20 years, and CDC research indicates that the trend is growing exponentially worse. The latest data show New Mexico has the second-highest rate in the country.
The infection is curable. And it’s alarming rise led the New Mexico Department of Health to issue an order aimed at increasing syphilis testing for anyone who’s pregnant in the state. This order came almost nine months after the department attempted unsuccessfully to get a bill on the same topic (SB 184) through the state Legislature.
The new state protocol requires practitioners to perform a blood test in the first and third trimesters and then again at delivery. It also says any pregnant person who goes to an urgent care, an emergency room, jail or prison, or experiences the death of their fetus in utero should be tested.
DOH specifies that patients must consent to these tests — and may opt out — but the order does not require practitioners to document that consent. There is debate within the medical community about whether physicians will ask about syphilis testing specifically.
Spike in cases
In the U.S., there were nearly 2,100 cases of newborn syphilis in 2020, preliminary CDC data show.
This is a more than 500% increase over eight years:
8.4 people per 100,000
54.5 people per 100,000
New Mexico was ranked sixth in the nation for rates of syphilis in 2018 but jumped up to the second-highest rate in the nation in 2019, according to the CDC.
In 2019, New Mexico had 26 cases of congenital syphilis. The average number of cases reported from 2012 to 2017 was only two, according to DOH.
The U.S. lags behind at least 13 other countries, including Belarus, Bermuda, Cuba, Malaysia and Thailand, who have managed to wipe out congenital syphilis, according to a report in the New England Journal of Medicine.
The consequences of congenital syphilis are devastating. In up to 80% of pregnancies, syphilis in a pregnant person can lead to severely adverse outcomes, including stillbirth, premature birth, neonatal death or congenital infection in the newborn, according to CDC researchers. The babies who survive can be blind, have hearing loss, deformed bones or damaged brains. Complications depend on how long the person was infected with syphilis during pregnancy and if any they got treatment.
A low-cost antibiotic, intramuscular penicillin, cures infection and prevents congenital syphilis. For about $15 per test, “screening and treatment is among the most cost-effective public health interventions in existence,” according to the 2010 study by CDC and World Health Organization researchers.
Pregnant people in New Mexico used to be tested only once in the first trimester of their pregnancy, but it was an “antiquated, naive idea that we test for STIs at the beginning of pregnancy and then think women don’t have sex again, until after their babies are born,” said Cathleen Hewlett-Masser, a nurse midwife for Women’s Specialists of New Mexico.
A history of distrust
In light of the DOH order, some providers are cautioning that education and patient consent remain paramount, given the stigma of sexually transmitted infections.
Melissa Marie Lopez, a doula from southern New Mexico, said requiring all patients to test multiple times doesn’t make sense. “From the clients that I’ve talked to, it reinforces this distrust relationship between providers and patients,” she said.
Running additional tests that presume someone is not in a monogamous relationship, or that they can’t trust their partner, can further strain an already tenuous patient-provider dynamic, she added.
“The root of it all is this ongoing distrust of the people in front of you,” Lopez said. “You need to be asking the questions and taking the time to understand the person in front of you, rather than just blanketing a policy across the board.”
Lopez added that this is especially true for women of color. A 2018 study out of Australia reported that women of color are more likely than whites to be both sexualized and perceived as less than fully human by their health care providers.
This leads some patients to avoid the doctor’s office, Lopez said, which might explain why the rate of reported cases of congenital syphilis is 5.9 times higher in a category the CDC identifies as American Indian/Alaska Natives than among whites.
Signs of syphilis, a curable but stigmatized infection
The first sign of syphilis is a canker — an open sore — but it’s a painless open sore, Hewlett-Masser said. And men and women experience these symptoms differently, which can lead to delays in treatment.
“Men have visual access to their genitalia, and so men usually present symptoms and are like, ‘Oh my gosh, what’s this thing on my penis?’“, Hewlett-Masser said. “Whereas women — if you have a painless ulcer and you can’t see your reproductive tissue — don’t know that they have it. And so a lot of times women don’t get treated for primary syphilis, because they never knew that they had it, and they’re in some sort of latent phase of syphilis when they start their prenatal care.”
Abigail Lanin Eaves, executive director and staff midwife at Dar a Luz birth center, said respect for patient autonomy is why her clinic is also allowing all of their patients to opt out of the syphilis test at the time of delivery.
“Because we’ve had such low rates of syphilis at the birth center, we let them opt out of the one at birth,” Eaves said.
Shelley Mann-Lev, the president of the New Mexico Public Health Association, said a blanket mandate for each of the screenings is called for.
“By mandating that screening for all — like we do when we screen babies for all kinds of things — we make sure we catch every case,” Mann-Lev said. “And, when you’re trying to eradicate a disease you don’t want to go based on somebody’s perception that there’s no way they could be at-risk.”
Physician and Republican state Sen. Greg Schmedes said though he spoke against the 2021 bill to mandate testing — which he saw more as a mandate on insurance companies — he appreciates the public health order.
“Because it is a congenital problem that causes devastation to babies, we have to err on the side of caution,” Schmedes said.
Andrew Gans is a manager at DOH focusing on HIV, STD and hepatitis. He said patients can opt out of the syphilis testing if they want to, but most won’t even think about it.
“What happens with a lot of patients is the provider’s going to order the best practice of labs and say, ‘Hey, I’m ordering a whole bunch of stuff.’ ” The provider may not remember to mention the syphilis test specifically, Gans said.
Medical ethics around syphilis
The 40-year Public Health Service Syphilis Study at Tuskegee from 1932 to 1972 continues to be highlighted as one of the worst examples of unethical research and medicine in U.S. history. As part of the study, researchers did not collect informed consent from predominantly Black participants. The study was about the effects of untreated syphilis, and the researchers did not offer treatment to hundreds of people they were studying, even after it was widely available. Many died or infected their partners unknowingly.
After the study was exposed, Congress passed the National Research Act to prevent such exploitation.
In 1997, President Clinton issued a formal presidential apology and dedicated funding to establish what would become The National Center for Bioethics in Research and Health Care at Tuskegee University.
Screening isn’t the only step in decreasing congenital syphilis cases. If a patient tests positive, treatment means the pregnant person receives penicillin shots, usually a week apart, until physicians start seeing a drop in antibody load, Hewlett-Masser said.
Gans said the DOH is well equipped to track people who test positive for syphilis to ensure they complete their treatment protocol.
“Our job is to track all reportable sexually transmitted diseases,” he said. “Our top priority is syphilis, followed by gonorrhea, followed by chlamydia. If we get a positive on a pregnant woman with syphilis, that is priority No. 1 — we are going to chase that down.”
Gans said his tracking team is effective and helped train those who did COVID contact tracing.
“COVID contact tracing is an easy cousin of STD contact tracing, because you don’t have to talk about sex,” Gans said.
The government and the bedroom
Sen. Schmedes is skeptical that screening alone will be enough to slow the spread of syphilis.
“This issue is broader than just syphilis. When you have increased spread in your community, it’s a symptom of a deeper problem,” he said.
Schmedes added that the behaviors associated with contracting sexually transmitted infections need to be addressed.
“If we’re just doing screening and detection, and we’re handing out antibiotics, and that’s it, I’m not going to be very happy if we stop there,” he said. “I think we need to go much further to protect our women and our young, young children.”
He talked about social changes, valuing again deeply committed relationships and turning away from pornography and objectification of women.
But that kind of moral idealism doesn’t sit well with everyone — especially in proximity to health care policy.
Lopez said if pregnant patients are having sex with one or multiple partners, that’s not a reflection of anyone’s morality, and it shouldn’t impact the way they receive care.
“Those are human rights and individual rights. The government shouldn’t be involved in our bedroom, period,” Lopez said.
It’s a physician’s job to look at who’s in front of them and then make the best recommendations for that patient, she added. “But the biggest problem is, they don’t ever get to know the clients. They know nothing about their home life. They are in there for five to 10 minutes.”
Panic funding vs. sustained funding
The difference between the U.S. and the countries that have been able to eradicate syphilis might be less about individual behavior and more about the way the countries fund and administer their public health programs, according to reporting on the issue in ProPublica.
Congress allocates money to the CDC, but unlike many other federal agencies, that funding is often restricted by line items that include everything from broad categories like emerging infectious diseases and Alzheimer’s disease, to more rare conditions like interstitial cystitis and Tourette syndrome.
Tom Frieden, a former CDC director, said in an interview with NPR that he thinks that the way public health funding is allocated needs to be re-envisioned.
“It’s a deadly cycle of panic and neglect,” Frieden said. “Emergencies propel officials to throw money at a problem (Ebola, Zika, or COVID-19) but then as fear dies down so does motivation to finish the task. Ultimately if we keep looking away, the bugs will just keep coming back.”
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