My reporting revealed a deep reticence to talk about STDs. Here’s what we lose by not doing so.

“Our director is hesitant to get involved in this story.” 

“I’m concerned about women getting blamed.” 

“If it was any other condition — childhood cancer, COVID — we would have families lined up, but STDs are tricky. They’re very private.”

Prior to the pandemic, the U.S. saw six consecutive years of record-setting counts of sexually transmitted infections, according to the U.S. Centers for Disease Control and Prevention. The years 2020 and 2021 saw a dip in numbers, but experts say that’s most likely a reflection of decreased testing rather than decreased prevalence.

Despite that temporary dip, the most concerning data point was, and is, the unabated increase of congenital syphilis cases. 

A mother passing a syphilis infection to an unborn fetus is considered a sentinel event in public health — an outcome so rare and preventable that it indicates something broken within the system — and yet, in 2021, 166 babies died preventable deaths with thousands more born with potential lifelong disabilities. In comparison, there were three deaths in 2001.

You would think that this occurrence would raise alarm bells beyond the walls of local public health departments. You would think that advocates of all sorts would be clamoring to find a cause and a solution. The story of increasing maternal and congenital syphilis rates is, after all, fundamentally a story about lack of health care access and the complicated barriers that stand in the way. The number one predictor is inadequate prenatal care.

But at every turn reporting this story, I found reticence in talking about this issue, even from the most surprising organizations, many of which worked directly on maternal health and equity issues.

I don’t want to downplay the efforts of those who are doing crucial work on this issue — public health workers hitting the pavement to find patients and get them tested, and community health workers doing advanced primary care on the streets and in people’s homes. Those workers are doing everything they can to prevent additional infections with very limited resources.

But of the dozens of people interviewed for this story, only two were willing to even ask their patients if I could speak to them about what stood in the way of them getting to a doctor’s office during their pregnancy. I talked to public health departments up and down the state. I interviewed infectious disease pediatricians, obstetricians and gynecologists, researchers, social workers and home visiting nurses. I sat in on Alcoholics Anonymous and Narcotics Anonymous meetings and hung flyers with my contact information at residential treatment programs. I reached out to foster parent organizations, WIC program managers and homeless services organizations. I wracked my brain to think of any part of the health and social services safety net that would know and care about these women. But even if people were willing to talk about the issue generally, they weren’t willing to put a face to it.

It became very clear to me that the stigma surrounding sexually transmitted infections and our ability to combat their spread, is being perpetuated by the very organizations best positioned to help. And oftentimes, these organizations mean well. They don’t want the people they serve to be thought of as dirty or at fault for their diagnosis — common hallmarks of STD stigma. But deciding that sexual health is something that shouldn’t be talked about only serves to reinforce the idea that patients should be ashamed.

“Even at the recommendation level for testing, there’s a lot of talk about high risk and doctors determining who is ‘high risk.’ The minute you have to determine who is ‘high risk,’ prejudice goes into it,” said Vardit Lichtenstein, office manager at California Pregnancy Center in Fresno, which treats 40% of the maternal syphilis cases in the county. 

Prejudice and preconceived notions surrounding sexual orientation, race and ethnicity, income and social class permeate our official clinical testing recommendations. Aside from testing pregnant women for syphilis — which is a relatively recent recommendation — the CDC only recommends that gay men and boys get tested, as if they are the only population able to contract and spread the infection. But from college students to sex workers to housewives, anyone who is having sex is at risk of the full gamut of infections.

The first maternal syphilis patient that Vardit’s husband, Dr. Ron Lichtenstein, treated more than a decade ago was a 16-year-old blonde-haired, blue-eyed girl from the “right side of town.” Someone, whom Lichtenstein said he would have expected to be a suburban “soccer mom” in a few years time. By the books, she would not have been a patient at risk for the infection, nor would she have been tested at any point during her pregnancy (and in fact it wasn’t caught until delivery). But here she was — a positive case. 

“You could have blown me over with a feather,” said Lichtenstein, an OB-GYN. His clinic started testing every patient that walked through the door, which remains an uncommon practice, and testing and treating partners as well.

Other advocacy movements for issues like homelessness and opioid addiction have learned that putting real human stories, experiences and names to a cause can spur real change in the form of policy, funding and public support. 

The Crystal Meth Anonymous website says: “For many years, we in CMA have appreciated the support we have received from our friends in the media. You have assisted in saving countless lives. We seek your continued cooperation in protecting the anonymity of our members at the public level.” What follows are recommendations for protecting the privacy of group members and getting permission from individuals. They are exceedingly protective of the covenant of anonymity promised in their organization’s name, but they recognize that telling these stories is critical to preventing them.

And yet when we broach the topic of sexual health, we clam up. There’s something about what happens in the bedroom that we’ve deemed off-limits even from medical providers, who often don’t have the training to talk about sexual health among diverse patient populations with care and sensitivity. Instead, patients may get a pamphlet and be sent on their way.

“When I ask clients what kind of sex they’re having, nine times out of 10 the answer is ‘regular sex.’ Well, what is regular sex? Is it anal, oral, how many partners?” Hou Vang, a communicable disease specialist from Fresno County Department of Public Health, told me. His job involves finding people with positive STD/STI tests, disclosing their diagnosis, arranging treatment, and finding partners to be able to get them tested and treated as well. 

“We’re not asking because we’re nosy. We’re asking because it can increase your risk of infection. It can tell us what symptoms you’ve most likely experienced,” Vang said.

He tries his best to let patients know up front that he’s not there to judge them. He’s there to help them understand what the diagnosis means and what treatment options they have, sometimes spending over an hour with each person. He tries to find out who their partners are so that the spread of infection can be curtailed. It can be emotionally draining, delivering unpleasant news to people over and over again, but Vang said it’s people’s stories that keep him pushing forward.

“There are a lot of barriers beyond the clinical situation, and sometimes it’s not their fault,” Vang said. “You might hear a partner in the background (threatening them), they might have a hard time getting a ride, they might be pregnant, but their main priority is where am I going to sleep, what am I going to eat. All of that takes precedence to their health.”

Until we take the stigma out of STDs and start to treat them as the indicator of the deeper social forces shaping health, our efforts to contain what is now considered an epidemic will be severely hobbled, and the most vulnerable among us — unborn children — will bear the ultimate burden.