“This is a new outbreak that is moving very quickly, and I think there has been some difficulty in having a simple and efficient way to send data from jurisdictions” to the state Centers for Disease Control and Prevention United States, said Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists.
The CDC only recently shared a first public look at monkeypox case demographics, which showed the vast majority of cases were in men who have sex with men, with a median age of 36.
But the agency only has detailed information on about half of the reported cases, CDC Director Dr. Rochelle Walensky said.
Monkeypox is now a reportable disease, which means public health departments work with local healthcare providers to collect information about who was diagnosed and how they became ill. But it’s still completely voluntary for states to share monkeypox data with the CDC.
CNN contacted health departments in all 50 states; 29 responded, and they all said they are committed to sharing case data with the CDC. Some, however, said they collect more information than they share.
As the United States battles another public health challenge amid the ongoing Covid-19 pandemic, Walensky said she was “struck” by “how little authority we have at the CDC to receive the data”.
“We really want to get as much information and informed decisions as possible for the American public. And again, like we were for Covid, we’re again really challenged by the fact that we at the agency, have no authority to receive this data. We are working on it right now,” she said in a conversation with The Washington Post on Friday.
For example, Walensky said, the CDC has no 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 early 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 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 United States
But so far, 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 on Saturday that the United States is “committed to accelerating our response in the days ahead.”
A US public health emergency declaration could result in a formal requirement to report certain data, but it’s more often used to move funds, Hamilton said.
Although the public health emergency for Covid-19 imposed reporting requirements on health care, such as hospitals, the same did not apply to states and public health.
“Health services have a vested interest in providing the agency data,” Hamilton said. “The public health system needs and wants to submit data.”
Even if the motivation is there, the infrastructure in place to do so can make the process difficult.
“We would like to have a regular, standardized process — even when new diseases and conditions emerge — that at least has a way to automatically send baseline data from a state’s reportable disease system,” Hamilton said. “But in the current infrastructure, that doesn’t exist.”
Instead, it’s a “very manual process” in which, for each case, states either have to enter all the information by hand or upload a file to the system that might be missing some fields if they don’t. they are not formatted the same way.
With monkeypox, for example, evidence shows it is spread primarily through prolonged physical contact, such as sex. People tested for the virus may be more willing to give their clinician a range of the number of sexual partners they have. But if the surveillance database requires a specific number for this question, categorical data collected by the clinician or health service may not be included when submitting the case report.
Data modernization at the CDC has been grossly underfunded, Hamilton said.
“Believe it or not, 2020 was the first year the agency received funding for a more integrated approach to managing disease surveillance data. And, of course, that was right when the pandemic hit. .”
“We don’t have enough detailed data on the cases”
Overall, the lack of data hampers efforts to predict the path the monkeypox outbreak might take.
“At this time, we do not have enough detailed case data to develop robust estimates,” a CDC spokesperson said.
“We anticipate that as the outbreak progresses, we will be able to share our predictions,” the spokesperson said.
Meanwhile, the vaccine supply is nowhere near enough to meet demand — and only covers a fraction of the population the CDC has recommended.
The cases are also most likely underreported.
Walensky said she expects cases to increase in the coming weeks, for three main reasons: a streamlined reporting form that allows states to report cases faster and easier, increased testing as commercial labs have started offering tests and recent exposures that will begin to show symptoms.
“It is true that we have work to do – here and abroad – and we are likely to see more cases of monkeypox in the short term, but it is possible to significantly reduce the number of cases and contain the epidemic. 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.