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Missouri health workers push to reduce congenital syphilis infections killing babies

A mother holding a baby and surrounded by doctors.
Sally Deng
Special to NPR
In the majority of Missouri’s rising cases of congenital syphilis, mothers had little to no prenatal care, highlighting a larger issue of maternal health care access. Legislation introduced in the House and Senate aims to address the crisis.

Suzanne Alexander remembers vividly the reports of the St. Louis babies born with congenital syphilis.

Blindness, deafness, developmental delays.

Some were underweight. Others had problems with their bones.

That’s if they survived.

Alexander, the bureau chief for communicable diseases with the City of St. Louis Department of Health and a member of a task force studying the causes of Missouri’s climbing congenital syphilis numbers, said in more than half the cases she has reviewed, an alarming trend stood out.

The mothers of babies born with this infection hardly had prenatal care.

Health departments across the state and country have been sounding the alarms for the past few years as congenital syphilis cases rose and community health workers became overburdened.

From 2017 to 2021, congenital syphilis cases rose 219% across the country; in Missouri, they rose 593%, according to the Centers for Disease Control and Prevention.

Between 2012 and 2015, one stillbirth from a congenital syphilis case was reported in Missouri. Since then, there’s been at least one infant death every year, with 18 deaths reported between 2016 and 2022, according to the Missouri Department of Health and Senior Services.

If detected early enough, the disease is reversible in the womb.

Two bills filed by Republicans in the House and Senate would put a system in place to catch more of these cases. The legislation comes as the state health department published another alert last week reporting that in 2022, Missouri recorded 81 congenital syphilis cases — the most in 30 years.

“This is an eightfold increase in a preventable disease,” the advisory warned.

Right now, only two syphilis tests are required in pregnancy: one in the first trimester and one at birth. The legislation would add a third test at 28 weeks, when there is still time to treat the mother and baby. The bill would also require a third trimester test for HIV and hepatitis C and hepatitis B, which can cause liver damage in infants.

“We are sending the signal to providers that this is an incredibly important service,” Alexander said. “And they have the support of the legislature.”

What is congenital syphilis?

A mother can pass along congenital syphilis in utero at any point in pregnancy.

For adults, the symptoms, if there are any, can include a rash on the palms of a person’s hands or on the soles of their feet, hair loss, swollen lymph nodes or sores. Often these symptoms go away on their own, though the disease remains.

If a mother is infected within four weeks of delivering their baby and doesn’t get treatment, the infant has a 40% chance of dying at birth or shortly after, according to the CDC.

“This bill is really about maternal and infant health, making sure that these mothers have the care that they need so that their babies can have the care that they need,” said state Rep. Melanie Stinnett, a Springfield Republican sponsoring the legislation who also helped pass postpartum Medicaid expansion last year.

The Missouri Department of Health and Senior Services partners with 180 STI testing and treatment sites across the state. Locations can be found at health.mo.gov/testing.

The testing could be done at a normal appointment and wouldn’t require an additional visit to the doctor. The cost would be covered by Medicaid.

Stinnett, who has a background in health care serving as vice president of therapy services at The Ark of the Ozarks, a nonprofit for people with disabilities in Springfield, said she has high hopes the bill, which has garnered bipartisan support, will pass.

An identical bill was put forward by state Sen. Elaine Gannon, a Republican from De Soto. That bill got a committee hearing, but has not yet been voted on.

“Healthy moms equal healthy babies,” Gannon said Wednesday before the Senate Health and Welfare Committee. “This is just another step we can take to ensure our most vulnerable population gets the health care they deserve.”

The American College of Obstetricians and Gynecologists and the Missouri Center for Public Health Excellence have testified in support of both bills.

Syphilis trends in Missouri

Dustin Hampton, bureau chief of HIV, STD and Hepatitis at the state health department, said in the past two years, he’s seen a shift in the populations most affected by syphilis.

Most cases used to be in men who have sex with men in urban areas, Hampton said; thus, much of the health department’s education and messaging targeted this group for the past 15 years. But in recent years, the cases have shifted more to white, heterosexual people in rural areas.

In most of the congenital cases they’ve seen, the woman either went to only one prenatal appointment, or none at all.

“Many times the only care they received was when they were as they arrived at the hospital for delivery,” he said.

Hampton said the legislation will help identify cases faster, but it won’t prevent the spread of syphilis between sexual partners.

“The populations that are experiencing syphilis increases now may not even be aware that they’re at risk for syphilis,” he said, adding that he’s heard many stories of women who didn’t know they had syphilis until the day their child was born.

Hampton said the health department started providing some of their testing sites with rapid syphilis tests, so patients can get results within 20 minutes rather than waiting a few days.

The department also formed a statewide syphilis advisory group and they’re in the process of putting together a congenital syphilis review board. They’ve also helped double the number of disease intervention specialists at public health and county health agencies.

Treatment for syphilis during pregnancy requires three shots of Benzathine penicillin G spread one week apart.

A recent investigation by ProPublica highlighted some shortages of the medicationused to treat syphilis.

Lisa Cox, a spokeswoman with the Missouri Department of Health and Senior Services, said the state has so far not experienced a shortage.

“We have continued to regularly get shipments of Bicillin from our distributor,” Cox said. “We maintain an adequate supply of medication and have encouraged providers to utilize shared decision-making for all people they treat for syphilis.”

A crisis beyond STI testing

As lawmakers work on a legislative fix, local Missouri governments are confronting issues that run deeper than just lack of testing.

As Alexander reviewed cases in St. Louis, where there was an 11-fold increase in congenital syphilis cases between 2017 and 2021, she noticed how few women had prenatal care and how many had a history of substance abuse issues.

“One of the difficulties in this tragedy is that not everyone screens for social determinants of health,” she said. “So we don’t know what supports a mother might need to have the capacity to pursue treatment.”

The St. Louis Health Department is currently meeting with community-based organizations and those who’ve been diagnosed with syphilis to learn more about common barriers to prevention education and treatment.

“There are very few success stories from ignoring the problem,” Alexander said. “We’re seeing the impact of lack of access, and we’re seeing the impact of not knowing what the disease looks like when you’ve been sick all your life, because we’ve never had good medical care.”

In St. Louis, the greatest increase has been in Black women. Stigma plays a role, Alexander said, as does lack of adequate sex education in schools so that partners would be more likely to use condoms.

“There is a genuine fear among women in general of being labeled ‘disease-ridden,’” she said.

At the business session ahead of Thursday’s Kansas City Council meeting, Dr. Benjamin Grin, Chief Medical Officer with the Kansas City Health Department, said the issue isn’t that moms aren’t getting tested at appointments, it’s that they aren’t getting prenatal care in the first place.

He attributed this to social determinants of health including substance use disorder, housing insecurity, intimate partner violence and lack of transportation. Grin said they’ve also lost contact with mothers who have a positive diagnosis but then don’t come back for their full treatment.

In Kansas City, there’s been a 221% increase in syphilis cases in women since 2017. Many of those women were of child-bearing age. As a result, the city has added five STD positions and two surveillance positions to the health department in the hopes of more efficient contact tracing, particularly after area sexual health clinics saw a decline in visits during the pandemic.

Tracy Russell, Executive Director at Nurture KC, said her non-profit, which serves about 300 pregnant and new mothers from the metro’s 14 poorest zip codes, said they also help educate families on safe sex practices.

Russell said lack of knowledge of STIs continues to be an issue. Some families don’t know that STIs in pregnancy are possible, or that they can be infected but asymptomatic.

“The message that always resonates the most with pregnant women is the impact on the baby,” Russell said.

But it still doesn’t guarantee good access to medical care. Russell pointed to lack of trust in the medical system, particularly in communities of color.

“You can’t underestimate that distrust of the system … not having enough providers who are from these communities is very problematic, too,” she said. “It’s all these issues that converge, and create these types of outcomes.”

This story was originally published in The Missouri Independent, part of the States Newsroom.

Anna Spoerre covers reproductive health care for the Missouri Independent.