In public health, a “sentinel event” is a case of preventable harm so significant that it is 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 cross 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 they will have a miscarriage or that their babies will be stillborn or die shortly after birth. Those who survive can be born with deformed bones or damaged brains, or suffer from severe anemia, hearing loss or blindness.
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, but the United States faces its highest incidence in nearly three decades: Last year, there were 2,022 cases, 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 rising sexually transmitted diseases but also left us ill-prepared for the coronavirus pandemic.
State and local health departments get much of their money from the federal agency, which has the best bird’s-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 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 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 few 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 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 wake-up call,” yet in 2018, the CDC scaled back its epidemic prevention work as money ran out.
That means public health in the United States is constantly in what Frieden calls “a deadly cycle of panic and neglect” – with officials scrambling to throw money at the latest emergency, then losing the attention and motivation to finish the task once fear ebbs. In May, President Biden’s administration announced that 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.”
Jo Valentine, former program coordinator for the CDC’s 1999 campaign to eliminate syphilis, says one of the reasons it 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 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, Calif., 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 re-examining 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 reporting about 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.