“It’s a really new and fast-moving outbreak, and I think there have been some challenges around having a seamless and efficient way of sending data from jurisdictions” to the US Centers for Disease Control and Prevention, said Janet Hamilton, executive director. Director of the State Council and Regional Epidemiologists.
The CDC recently shared its first demographic overview of a monkeypox case, which showed that the vast majority of cases were among men who have sex with men, with an average age of 36.
Dr. Rochelle Wallinsky, director of the Centers for Disease Control and Prevention, said the agency has detailed information on only about half of the reported cases.
Monkeypox is now a reportable disease, which means that public health departments are working with local health care providers to gather information about who has been diagnosed and how they have contracted the disease. But it is still entirely voluntary for states to share data on monkeypox with the Centers for Disease Control and Prevention.
As the United States grapples with another public health challenge amid the ongoing Covid-19 pandemic, Walinsky said she was “surprised” at the lack of authority we have at the CDC to receive data.
“We very much want to get as much information and informed decisions as possible for the American public. And again, just like we were with Covid, we are again challenged by the fact that we at the agency do not have the authority to receive this data. We are working on that now,” She said in a conversation with the Washington Post on Friday.
For example, Walinsky said, the Centers for Disease Control and Prevention 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, a contract that would expand the agency’s access to data collected by states.
After soliciting feedback from states, the CDC shared a revised version of the agreement focused exclusively on vaccine management data. States review the document, and few have signed it.
The latest version of the data use agreement has “requirements and infrastructure similar to those countries already use for Covid-19 vaccine data reporting,” according to the CDC.
Monkeypox is no longer 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 was still assessing the situation. US Secretary of Health and Human Services Xavier Becerra said in a statement Saturday that the United States is “determined to accelerate our response in the coming days.”
Hamilton said the US declaration of a public health emergency could bring with it a formal requirement to report certain data, but it is often used to move money.
Although the public health emergency of Covid-19 has brought reporting requirements to health care, such as hospitals, the same has not been true for states and public health.
“Health departments have an interest in providing agency data,” Hamilton said. “The public health system needs and wants to provide data.”
Even if the motivation is there, the infrastructure in place to do so can make the process challenging.
“We would like to have a regular, standardized process – even when new diseases and cases emerge – that has at least a way to automatically send basic data from the state’s disease-reportable system,” Hamilton said. “But in the current infrastructure, that doesn’t exist.”
Instead, it’s a “very manual process” and in each case states either have to enter all the information manually or load a file into the system that might lose some fields if they’re not formatted the same way.
For monkeypox, for example, evidence shows that it is mostly spread through prolonged physical contact, such as sex. People who are tested for the virus may be more willing to give their doctor a range of sexual partners they have. 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.
Hamilton said updating the data at the CDC is seriously underfunded.
“2020, believe it or not, was the first year that the agency received credits for a more integrated approach to disease surveillance data management. And of course, that was true as the pandemic spread.”
“We don’t have enough detailed case data”
Overall, a lack of data hampers efforts to predict the course a monkeypox outbreak might take.
“Currently 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 expectations,” the spokesperson said.
Meanwhile, supplies of the vaccine are woefully inadequate to meet demand — and cover only a small portion of the population that the Centers for Disease Control and Prevention (CDC) has recommended getting it.
Cases are also likely to be undercounted.
Walinsky said she expects an increase in cases in the coming weeks, for three main reasons: a simplified reporting form that makes it quicker and easier for states to report cases, an increase in testing as commercial laboratories begin to provide tests, and recent exposures. that will begin to show symptoms.
“It is true that we have to do work – both here and internationally – and we are likely to see more monkeypox cases in the near term, but it is possible to reduce the number of cases significantly and contain the current outbreak of monkeypox through education, increased testing and access to vaccines – All of our priorities have made significant progress,” the CDC said in a statement to CNN.
CNN’s Brenda Goodman and Catherine Dillinger contributed to this report.