“This is a new and really fast-moving epidemic, and I think there have been some challenges around providing a smooth and efficient way to send the data from jurisdictions” to the US Centers for Disease Control and Prevention, said Janet Hamilton, executive director of Council of State and Territorial Epidemiologists.
The CDC only recently shared its first public look at the demographics of monkeypox cases, which showed that the majority of cases are among men who have sex with men, with an average age of 36.
But the agency has detailed information on only about half of the reported cases, said CDC Director Dr. Rochelle Walensky.
Monkeypox is now a reportable disease, meaning public health departments work with local health care providers to collect information about people who have been diagnosed and how they got sick. But it’s still completely voluntary for states to share monkeypox data with the CDC.
CNN contacted health departments in all 50 states; 29 answered and all of them said they have committed to sharing case data with the CDC. However, some said they collect more information than they share.
As the U.S. grapples with another public health challenge amid the ongoing Covid-19 pandemic, Walensky said she is “stunned” by “how little authority we at the CDC have to get the data.”
“We very much want to get as much information and informed decisions to the American public as possible.” And yet, as we were for Covid, we’re again really challenged by the fact that we at the agency don’t have the authority to get them. We’re working on that right now,” she told 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 that data.
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 the data states collect.
After receiving feedback from states, the CDC shared a revised version of the agreement that focuses exclusively on vaccine administration data. Countries are reviewing the document and several have signed it.
The latest version of the data use agreement has “similar requirements and infrastructure to what states already use to report Covid-19 vaccine data,” according to the CDC.
Monkeypox is not yet a public health emergency in the US
But monkeypox has not yet been declared a public health emergency in the United States. American health officials said over the weekend that the United States was still assessing the situation. US Health and Human Services Secretary Xavier Becerra said in a statement on Saturday that the US was “determined to accelerate its response in the coming days”.
A U.S. declaration of a public health emergency can lead to a formal requirement to report certain data, but is more often used to move funds, Hamilton said.
Although the public health emergency for Covid-19 has led to reporting requirements in health care, like hospitals, the same is not true for states and public health.
“Health departments have a vested interest in providing data to the agency,” Hamilton said. “The public health system needs and wants to provide data.”
Even if the motivation is there, the existing infrastructure to do so can make the process challenging.
“We would love to have a regular, standardized process — even as new diseases and conditions emerge — that at least has a way for the basic data to automatically be sent from the state’s disease reporting system,” Hamilton said. “But in the current infrastructure, that doesn’t exist.”
Instead, it’s a “very manual process” where states must either enter all the information by hand or upload a file to the system, which may miss some fields if they’re not formatted the same way.
With monkeypox, for example, evidence shows that it is spread mostly through prolonged physical contact, such as sex. People who get tested for the virus may be more willing to give their clinician a range of how many sexual partners they have. But if the surveillance database requires a specific number for this question, then categorical data collected by the clinician or health department may not be included when submitting the case report.
Data modernization at the CDC is severely underfunded, Hamilton said.
“2020, believe it or not, was the first year the agency received appropriations for a more integrated approach to disease surveillance data management. And, of course, that was right after the pandemic hit.”
“We don’t have enough details about the case”
Overall, the lack of data has hampered efforts to predict the path the monkeypox epidemic might take.
“At this time, we do not have enough detailed case data to develop robust estimates,” a CDC spokesperson said.
“We expect that as the outbreak progresses we will be able to share predictions,” the spokesman said.
Meanwhile, vaccine supplies are far from enough to meet demand — and cover only a fraction of the population the CDC has recommended receive it.
The cases are probably also insufficient.
Walensky said he expects an increase in cases in the coming weeks for three main reasons: a streamlined reporting form that makes it faster and easier for states to report cases, a surge in testing as commercial labs began offering tests and recent exposures that will begin to show symptoms.
“It is true that we have work to do – here and internationally – and it is likely that we will see more cases of monkeypox in the near future, but it is possible to significantly reduce the number of cases and control the current monkeypox epidemic through education and increased 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 Catherine Dillinger contributed to this report.