Babies who survive birth with congenital syphilis can have ailments such as deformed bones, brain damage, and hearing loss. Shown here is a shortening of the little finger due to congenital syphilis, called du Bois sign.

Opinion: Why the U.S. Hasn’t Stopped Syphilis From Killing Babies

The CDC’s funding structure has hampered the response to congenital syphilis and left us ill-prepared for a pandemic.

In public health, a “sentinel event” is a case of preventable harm so significant that it serves as a warning that the system is failing. The alarms are now blaring.

A growing number of babies are being born with syphilis after their mothers contract the sexually transmitted disease and the bacteria crosses the placenta. These cases are 100 percent preventable: When mothers who have syphilis are treated with penicillin while pregnant, babies are often born without a trace of the disease. But when mothers go untreated, there is a 40 percent chance their babies will be miscarried, be stillborn or die shortly after birth. Those who survive can be born with deformed bones or damaged brains, or can suffer from severe anemia, hearing loss, or blindness.

This story was originally published by ProPublica and is republished here under a Creative Commons license.

I’ve spent the past few months trying to understand why countries including Belarus, Cuba, Malaysia, and Sri Lanka have managed to wipe out congenital syphilis while the United States faces its highest incidence in nearly three decades: Last year, 2,022 cases were reported, including 139 deaths. That’s a shocking reversal from 1999, when the Centers for Disease Control and Prevention declared that the United States was on the verge of eliminating the centuries-old scourge for adults as well as babies.

What went wrong here?

My reporting led me to one major factor: the unusual and — according to various experts I spoke with, problematic — way that the CDC is funded, which has not only hampered the response to a rise in sexually transmitted diseases, but also has left us ill-prepared for the Covid-19 pandemic.

State and local health departments get much of their money from the federal agency, which has the best birds-eye view of all of the bugs, viruses, and illnesses circulating in America. But CDC scientists don’t have the power to decide how much money to spend fighting each one.

Instead, Congress dictates to the CDC, in an uncommonly specific manner not seen with many other agencies, exactly how much money, by line item, it can spend to combat any single public health threat, from broad categories like emerging infectious diseases and Alzheimer’s disease, to more niche conditions like interstitial cystitis, neonatal abstinence syndrome, and Tourette syndrome. Though prevention tactics for HIV and other STDs significantly overlap, HIV prevention has a separate line item and is allocated about six times as much money as the category for sexually transmitted infections.

The decisions can be politically driven and detached from bigger-picture health needs, as lobbyists and patient advocates descend on Washington to make the case to lawmakers that their specific disease of interest should get a bigger piece of the pie. Causes that don’t have large armies of compelling spokespeople can get ignored. Sexually transmitted diseases, which have an extra layer of stigma to contend with, have few dedicated advocacy groups. The small number of lobbyists focused on STDs sometimes can’t even get a meeting with lawmakers.

“The CDC needs to have more money and more flexible money,” former CDC director Dr. Tom Frieden told me. The political nature of the agency’s funding is part of what led the country to neglect virus surveillance before the coronavirus pandemic. The 2014 Ebola epidemic was supposed to be a “global wakeup call,” yet in 2018, the CDC scaled back its epidemic prevention work as money ran out.

That means public health in the U.S. is constantly in what Frieden calls “a deadly cycle of panic and neglect” — scrambling to throw money at the latest emergency, then losing the attention and motivation to finish the task once fear ebbs. In May, President Joe Biden’s administration announced it would set aside $7.4 billion over the next five years to hire and train public health workers. But some officials worry about what will happen when those five years are up. “We’ve seen this movie before, right?” Frieden said. “Everyone gets concerned when there’s an outbreak, and when that outbreak stops, the headlines stop, and an economic downturn happens, the budget gets cut.”

Public health in the U.S. is constantly in what Frieden calls “a deadly cycle of panic and neglect.”

Jo Valentine, former program coordinator for the CDC’s 1999 push to eliminate syphilis, says one of the reasons the campaign failed is because public health is usually working “in rescue mode, parachuting in and fixing things.” That’s effective in acute situations, like stopping a new outbreak from exploding, but it doesn’t address long-term structural issues like economic stability, safe housing and transportation, which are all key factors in chronic and preventive care. The last fraction of cases in any public health effort can be the hardest to solve because they often involve vulnerable populations experiencing these barriers to accessing care. They are also the easiest populations to ignore.

Local health departments don’t have nearly enough resources to investigate cases of syphilis with contact tracing, which involves tracking down patients, inquiring about sex partners and making sure everyone is treated. One disease intervention specialist I shadowed in Fresno, California, has made six trips to a rural town, driving an hour each way, trying to prevent a single case of congenital syphilis. The patient is unhoused and itinerant, and so far has been hesitant to visit the community clinic for treatment.

With interest in public health now at an all-time high, it is worth reexamining how much money public health gets to take on these unpopular but necessary challenges, and how much authority the CDC gets to set its priorities. I hope that, five or 10 years from now, I’m not still reporting about Covid-19 hot spots left behind after attention wanes, creating places where the disease still flares because testing or treatment is hard to come by. And I also hope I’m not still writing about babies dying from syphilis.

Read ProPublica and NPR’s story.

Caroline Chen covers health care for ProPublica.