“It’s a new and very fast outbreak, and I think there have been some challenges around having a smooth and efficient way for data to be sent from jurisdictions” to the US Centers for Disease Control and Prevention, said Janet Hamilton, executive. director of the Council of State and Territory Epidemiologists.
The CDC recently shared the first public look at the demographics of monkeypox cases, which showed that the vast majority of cases have occurred among men who have sex with men, with an average age of 36.
But the agency has detailed information on only half of the reported cases, said CDC Director Dr. Rochelle Walensky.
Monkey pox is now a notifiable disease, meaning that public health departments work with local health care providers to collect information about people who are diagnosed with it and how they got sick. But it’s still entirely voluntary for states to share monkeypox data with the CDC.
CNN contacted health departments in all 50 states; 29 responded, and all said they agree to share case data with the CDC. Some, however, said they are collecting more information than they are sharing.
As the United States grapples with another public health challenge amid the ongoing Covid-19 pandemic, Walensky said she is “surprised” by “how little authority we have at CDC to receive the data.”
“We want to get as much information and informed decisions to the American public as possible. And again, as we did for Covid, we’re again really challenged by the fact that at the agency we don’t have the authority to receive -the. data. We’re working on that right now,” he said in a conversation with The Washington Post on Friday.
For example, Walensky said, the CDC does not have data on who has been vaccinated against monkeypox and does not yet have the authority to collect such data.
The only publicly shared data on monkeypox vaccines are weekly updates from the US Department of Health and Human Services on how many doses have been distributed in each state.
Last month, the CDC shared an initial draft of a data use agreement with states and other jurisdictions, essentially a contract that would expand the agency’s access to data states are collecting.
After soliciting comments from states, the CDC shared a revised version of the agreement that focuses exclusively on vaccine administration data. States are reviewing the document and a few have signed it.
The latest version of the data use agreement has “similar requirements and infrastructure to what states already use for reporting Covid-19 vaccine data,” according to the CDC.
Monkeypox is not yet a public health emergency in the US
Last month, the CDC activated its Emergency Operations Center to coordinate the response to the monkeypox outbreak and mobilize additional resources. And over the weekend, the World Health Organization declared monkeypox a public health emergency of international concern.
But until now, monkeypox has not been declared a public health emergency in the United States. US health officials said over the weekend that the US is still assessing the situation. US Health and Human Services Secretary Xavier Becerra said in a statement Saturday that the US is “determined to accelerate our response in the coming days.”
A U.S. declaration of a public health emergency could lead to an official requirement to report certain data, but it’s more often used to move funds, Hamilton said.
While the public health emergency over Covid-19 brought reporting requirements to health care, such as hospitals, the same did not happen to states and public health.
“Health departments have a vested interest in providing the agency’s data,” Hamilton said. “The public health system needs and wants to present data.”
Even if the motivation is there, the existing infrastructure to do so can make the process difficult.
“We would like to have a regular, standardized process, even as new diseases and conditions emerge, that at least has a way for basic data to be automatically sent out of a state’s reportable disease system,” Hamilton said. “But in today’s infrastructure, that doesn’t exist.”
Instead, it’s a “very manual process” where, for each case, states must enter all the information by hand or upload a file to the system that could miss some fields if they’re not in the same format .
With monkeypox, for example, evidence shows that it is spread primarily through prolonged physical contact, such as sex. People who get tested for the virus may be more willing to give their doctor a list of sexual partners they’ve had. But if the surveillance database requires a specific number for this question, categorical data collected by the physician or health department may not be included when the case report is submitted.
Data modernization at the CDC has been woefully inadequate, Hamilton said.
“2020, believe it or not, was the first year the agency received credit for a more integrated approach to managing disease surveillance data. And of course, it was right when the pandemic hit.” .
“We don’t have enough detailed data on the cases”
In general, a lack of data hampers efforts to predict the path the monkeypox outbreak might take.
“Right now we don’t have enough detailed case data to develop robust estimates,” a CDC spokesperson said.
The CDC’s new Center for Outbreak Forecasting and Analytics, which formally launched this spring, “has been working to better understand the monkeypox outbreak,” including how best to optimize interventions such as vaccines.
“We anticipate that as the outbreak progresses we will be able to share forecasts,” the spokesman said.
Meanwhile, the vaccine supply is far from sufficient to meet demand and covers only a portion of the population that the CDC has recommended.
Most likely, cases are also undercounted.
Walensky said he expects an increase in cases in the coming weeks for three main reasons: a simplified reporting form that makes it faster and easier for states to report cases, an increase in testing as labs commercials have begun to offer tests and recent exhibitions. that will start to show symptoms.
“It is true that we have work to do, here and internationally, and we are likely to see more cases of monkeypox in the near term, but it is possible to significantly decrease the number of cases and contain the current outbreak of monkeypox through education and increasing testing and access to vaccines, all priorities on which we have made dramatic progress,” the CDC said in a statement to CNN.
CNN’s Brenda Goodman and Katherine Dillinger contributed to this report.