More than two years into a global pandemic that has claimed more than 1 million lives here, the U.S. still has no federal mandate requiring reporting of most infectious pathogens.
Now, as one epidemiological crisis after another confronts an increasingly weary and threadbare U.S. public health system, experts are sounding the alarm. They say strengthened reporting requirements and a national electronic health records system are crucial to getting ahead of the next outbreaks.
“The public health system is managing a COVID outbreak, a monkeypox outbreak, a growing STD outbreak, an HIV epidemic that hasn’t gone away, infected strawberries, hepatitis among kids,” Dr. Georges Benjamin, executive director of the American Public Health Association, told Fortune.
“All these outbreaks require the same basic infrastructure. We’re doing it using, quite frankly, archaic tools that just don’t help us get the job done.”
Case in point: Baby formula
The U.S. is currently experiencing a once-unthinkable baby formula shortage after a single manufacturing plant closed down, throwing the entire supply chain into chaos.
Last fall the U.S. Food and Drug Administration began tracking reports of meningitis among infants who had consumed formula from a plant run by Abbott Laboratories. Two infants eventually died.
After detecting cronobacter in multiple areas of the plant—also known as Enterobacter sakazakii, a rare but potentially deadly pathogen known to thrive in dry environments like powdered infant formula—the federal agency shut it down and announced a massive formula recall in mid-February, inadvertently kicking off a nationwide shortage.
Only one state, Minnesota, requires medical professionals to report cases of the bacteria, often deadly in infants, and no such federal mandate exists, Dr. Jay Varma, chief medical advisor at the Kroll Institute, told Fortune.
Public health officials, legislators, and food safety authorities “need to think about what it would take to recognize these infections earlier in babies,” Varma said.
A good first step: mandating reporting of cronobacter.
“If you have a patient with cronobacter, it’s something you should investigate—99% of the time, these infections have been linked to powdered baby formula,” Varma said.
But medical professionals may not know that reporting the sometimes deadly bacteria is a good idea or even how to report it, he added.
A fractured system
Each state has its own laws when it comes to pathogens that must be reported.
All 50 states agree that salmonella must—an example of a “reportable” condition, according to the U.S. Centers for Disease Control.
But there is no federal law that requires reporting of pathogens with exception of the Coronavirus Aid, Relief, and Economic Security (CARES) Act, which requires all labs that perform COVID testing to report results.
On a national level, a list of “notifiable” diseases and conditions is created each year by the CDC with the Council of State and Territorial Epidemiologists, but states are only encouraged, not required, to report.
“The CDC needs greater authority to require reporting,” Benjamin said. “Right now, most reporting is still voluntary.”
Even with the nation in the throes of a pandemic, some states “are still refusing to share” COVID wastewater data, Benjamin said.
“We have states that are not actively sharing the information around race and ethnicity” in regards to COVID, which he said leads to a kind of national blindness on health disparities. “That doesn’t make any sense.”
But requiring reporting of certain pathogens and data at a federal level would likely entail a major overhaul and modernization of the Public Health Services Act, a 1944 federal law that allows the U.S. Department of Health and Human Services—the agency over the CDC and many other health-related agencies—to legally respond to public health emergencies, Benjamin said.
A ‘national health information highway’ would help
In absence of such a federal mandate—and, frankly, in addition to it—a “national health information highway” could facilitate and streamline reporting, experts contend.
Several countries are already doing it right, Benjamin said. Taiwan has an electronic medical records system that captures information and shares it nationwide while protecting patient confidentiality. And Britain, with its single-payer health system, also has a linked electronic health records system that performs well under pandemic-era stressors.
Such a aystem that could better address the current monkeypox outbreak, for example.
“You don’t have new cases in Florida and Oregon overnight unless it’s already in the community,” Benjamin said. “We saw that firsthand with COVID. There are more cases out there people aren’t picking up.”
U.S. efforts are underway but have been for more than two decades and are apt to be muddled by politics and red tape. The 2009 HITECH Act passed by Congress provided funding for cities and states’ individual efforts, but as a result, some states, like Delaware, got ahead of others that didn’t prioritize the issue. The U.S. Department of Veterans Affairs has a national electronic health records modernization program, and the 2009 American Recovery and Reinvestment Act allowed for incentive payments to hospitals and doctors that use electronic health records, especially Medicare and Medicaid providers. But once again, an uneven patchwork exists.
Meanwhile, some reports of dangerous pathogens are still sent via fax.
“Uber isn’t having a problem. Amazon isn’t having a problem. Banks absolutely don’t have that problem,” Benjamin said, referencing electronic records systems. “Is it technically capable? Yes. We have the technology to do it. This is a ‘spend the money’ issue.”
