PUBLIC POLICY – One Major Reason Why The U.S. Hasn’t Stopped Syphilis From Killing Babies

dWeb.News Article from Daniel Webster dWeb.News

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This op-ed has been co-published by The Washington Post.

In public health, a “sentinel” is an instance of avoidable harm that is so severe that it is a sign that the system has failed. Alarms are blaring now.

A growing number of babies are being brought up with syphilis by their mothers who have contracted the sexually transmitted disease. The bacteria then crosses the placenta. These cases are 100% 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% chance their babies will be miscarried, be stillborn or die shortly after birth. The survivors may have deformed bones, damaged brains or suffer from severe anemia.

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. However, CDC scientists are not able to determine how much money is needed to fight each of these diseases.

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. Although prevention strategies for HIV and other STDs overlap significantly, HIV prevention is a separate line item that receives approximately six times the money as the category for sexually transmitted diseases.

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. It is possible to ignore causes that do not have a large number of persuasive spokespeople. There are few advocacy groups for sexually transmitted diseases. Sometimes, the few lobbyists who are focused on STDs can’t get a meeting even with legislators.

“The CDC needs to have more money and more flexible money,” former CDC director Dr. Tom Frieden told me. Part of the reason the country neglected virus surveillance prior to the coronavirus pandemic was the political nature of the funding agency. 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. Officials are concerned about what will happen after those five years. Frieden stated, “We’ve all seen the movie before.” “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 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. Because these cases often involve vulnerable populations who are unable to access care, the last fraction of cases can be difficult to address in public health efforts. These are the easiest populations to overlook.

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. A disease intervention specialist in Fresno, California that I shadowed made six trips to rural towns, driving over an hour each way to try to prevent congenital syphilis. The patient is homeless and wandering and has so far been reluctant to go to the community clinic.

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. I hope that I don’t continue to write about syphilis-related deaths in babies.

Read ProPublica and NPR’s story.

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