The CDC does not publish large portions of the COVID-19 data it collects
The CDC does not publish large portions of the COVID-19 data it collects

The CDC does not publish large portions of the COVID-19 data it collects

By Apoorva Mandavilli, New York Times

For more than a year, the Centers for Disease Control and Prevention has been collecting data on hospital admissions for COVID-19 in the United States and broken down by age, race, and vaccination status. But it has not published most of the information.

When the CDC released the first significant data two weeks ago on the effectiveness of boosters in adults younger than 65, it omitted the figures for a large portion of this population: 18- to 49-year-olds, the group the data showed were least likely to to take advantage of extra shots because the first two doses already left them well protected.

The agency recently debuted a dashboard with wastewater data on its website, which will be updated daily and may provide early signals of an upcoming increase in COVID-19 cases. Some states and localities had shared wastewater information with the agency since the beginning of the pandemic, but it had never before released these findings.

Two full years into the pandemic, the agency leading the country’s response to the public health emergency has released only a small fraction of the data it has collected, said several people familiar with the data.

Much of the information withheld can help state and local health authorities better target their efforts to bring the virus under control. Detailed, timely data on hospital admissions by age and race would help health authorities identify and assist the most at-risk populations. Information on hospitalizations and deaths by age and vaccination status would have helped inform whether healthy adults needed booster shots. And wastewater monitoring across the country would detect eruptions and new varieties early on.

Without the booster data for 18- to 49-year-olds, the external experts consulted by federal health authorities had to rely on figures from Israel to make their recommendations for the shots.

Kristen Nordlund, a spokeswoman for the CDC, said the agency has been slow to release the various data streams “because basically, at the end of the day, it is not yet ready for prime time.” She said the agency’s “priority in collecting data is to ensure that it is accurate and actionable.”

Another reason is fear that the information may be misinterpreted, Nordlund said.

Dr. Daniel Jernigan, the agency’s deputy director of public health science and surveillance, said the pandemic revealed the fact that computer systems at the CDC and at the state level are outdated and not ready to handle large amounts of data. CDC researchers are trying to modernize the systems, he said.

“We want better, faster data that can lead to decision-making and action at all levels of public health, which can help us eliminate the delay in data that has held us back,” he added.

The CDC also has several bureaucratic departments to sign important publications, and its officials are to warn the Department of Health and Human Services – which oversees the agency – and the White House about their plans. The agency often shares data with states and partners before data is published. These steps can add delays.

“The CDC is a political organization as much as it is a public health organization,” said Samuel Scarpino, executive director of pathogen monitoring at the Rockefeller Foundation’s Pandemic Prevention Institute. “The steps required to get something like this released are often far beyond the control of many of the scientists working at the CDC.”

The provision of vaccines and boosters, especially in younger adults, is among the most conspicuous omissions in data published by the CDC.

Last year, the agency repeatedly came under fire for not tracking down so-called breakthrough infections in vaccinated Americans and focusing only on people who became ill enough to be hospitalized or die. The agency presented this information as risk comparisons with unvaccinated adults, rather than providing timely snapshots of inpatients stratified by age, gender, race, and vaccination status.

But the CDC has been routinely gathering information since the COVID-19 vaccines were first rolled out last year, according to a federal official familiar with the effort. The agency has been reluctant to release these figures, the official said, because they could be misinterpreted as the vaccines being ineffective.

Nordlund confirmed this as one of the reasons. Another reason, she said, is that the data represent only 10% of the U.S. population. But the CDC has relied on the same level of sampling to track flu for years.

Some external public health experts were amazed to hear that information was available.

“We’re been begging for that kind of granularity of data for two years,” said Jessica Malaty Rivera, a public health researcher and part of the team that ran the COVID Tracking Project, an independent effort that compiled data on the pandemic until March 2021.

A detailed analysis, she said, “builds public trust, and it paints a much clearer picture of what’s actually going on.”

Concerns about the misinterpretation of hospitalization data broken down by vaccination status are not unique to the CDC. On Thursday, Scottish public health officials said they would stop releasing data on COVID-19 hospitalizations and deaths following vaccination status due to similar fears that the numbers would be misrepresented by anti-vaccine groups.

But experts dismissed potential misuse or misinterpretation of data as an acceptable reason for not releasing them.

“We have a much greater risk of misinterpreting the data with the data vacuum than sharing the data with proper science, communication and reservations,” Rivera said.

When the Delta variant caused an outbreak in Massachusetts last summer, the fact that three-quarters of those infected were vaccinated led people to mistakenly conclude that the vaccines were powerless against the virus – confirming the CDC’s concerns.

But it could have been avoided if the agency had educated the public from the start that as more people are vaccinated, the percentage of vaccinated people who are infected or hospitalized would also increase, public health experts said.

“Tell the truth, present the data,” said Dr. Paul Offit, a vaccine expert and advisor to the Food and Drug Administration. “I have to believe that there is a way to explain these things so people can understand it.”

Knowing what groups of people were hospitalized in the United States, what other conditions these patients may have had, and how vaccines changed the picture over time, would have been invaluable, Offit said.

Relying on Israeli data to make booster recommendations to Americans was less than ideal, Offit noted. Israel defines serious illness differently than the United States, among other factors.

“There’s no reason why they should be better at collecting and presenting data than we were,” Offit said of Israeli scientists. “The CDC is the most important epidemiological agency in this country, and so you would like to think that the data came from them.”

It has also been difficult to find CDC data on the proportion of children admitted to COVID-19 who have other medical conditions, said Dr. Yvonne Maldonado, Chair of the American Academy of Pediatrics’ Committee on Infectious Diseases.

Academy staff asked their partners at the CDC for this information during a December call, according to an AAP spokesman, and were told it was not available.

Nordlund pointed to data on the agency’s website that contains this information, and to several published reports on pediatric admissions with information on children who have other health conditions.

The Pediatric Academy has repeatedly asked the CDC for an estimate of the susceptibility of a person infected with the coronavirus five days after the onset of symptoms – but Maldonado finally got the answer from an article in The New York Times in December.

“They’ve known it for over a year and a half, not true, and they have not told us that,” she said. “I mean, you can not figure anything out from them.”

Experts in wastewater analysis were more understanding of the CDC’s slow pace of publishing this data. The CDC has been building the wastewater system since September 2020, and the capacity to present the data over the last few months, Nordlund said. Meanwhile, CDC state partners have had access to the data, she said.

Despite careful preparation, the CDC released the wastewater data a week later than planned. The COVID Data Tracker is only updated on Thursdays, and the day before the original release date, the researchers managing the tracker realized they needed more time to integrate the data.

“It was not because the data was not clear, it was because the systems and how they were physically displayed on the page did not work as they wanted,” said Nordlund.

The CDC has received more than $ 1 billion to modernize its systems, which could help increase the pace, Nordlund said. “We’re working on it,” she said.

The agency’s public dashboard now has data from 31 states. Eight of these states, including Utah, began sending their numbers to the CDC in the fall of 2020. Some relied on scientists volunteering for their expertise; other paid private companies. But many others, such as the Mississippi, New Mexico and North Dakota, have not yet begun to track wastewater.

Utah’s early 2020 program has now grown to cover 88% of the state’s population, with samples collected twice a week, according to Nathan LaCross, who manages Utah’s wastewater monitoring program.

Wastewater data reflects the presence of the virus in an entire community, so it is not plagued by concerns about privacy associated with medical information that would normally complicate data release, experts said.

“There are a lot of very important and significant legal and ethical challenges that do not exist for wastewater data,” Scarpino said. “The lowered bar should definitely mean that data could flow faster.”

Wastewater tracking can help identify areas that are experiencing a high burden of cases early, LaCross said. It allows officials to better allocate resources such as mobile test teams and test sites.

Wastewater is also a much faster and more reliable barometer of the spread of the virus than the number of cases or positive tests. Long before the nation became aware of the delta variant, for example, scientists tracking wastewater had seen its rise and warned the CDC, Scarpino said. They did so in early May, just before the agency famously said vaccinated people could take off their masks.

Already, the agency is dependent on a technique that captures the amount of virus, but not the different variants in the mix, says Mariana Matus, CEO of BioBot Analytics, which specializes in wastewater analysis. This will make it difficult for the agency to spot and respond to outbreaks of new varieties in a timely manner, she said.

“It gets really exhausting when you see the private sector work faster than the world’s leading public health agency,” Rivera said.

This article originally appeared in New York Times.

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