(CNN) — Two months after the United States confirmed its first case of monkeypox, the total has risen to about 2,900. However, details about those infections and other epidemiological data are not spreading as fast as the virus itself, leaving gaps in the response against the disease.
“This is a new and very fast-moving outbreak. I think there have been some challenges in terms of having a smooth and efficient way to get data from jurisdictions” to the Centers for Disease Control and Prevention (CDC). for its acronym in English), said Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists.
The CDC recently shared a first look at the demographics of monkeypox cases. The data revealed that the vast majority of cases are among men who have sex with men, with an average age of 36 years.
However, the agency only has detailed information on about half of the reported cases, said Dr. Rochelle Walensky, director of the CDC.
Monkeypox is now a notifiable disease, which means public health departments work with local health care providers to collect information about people diagnosed and how they got sick. But it remains entirely voluntary for states to share monkeypox data with the CDC.
CNN contacted health departments in all 50 states. Of those, 29 responded, all stating that they are committed to sharing data on monkeypox cases with the CDC. Some, however, said they collect more information than they share.
As the United States faces another public health challenge amid the ongoing Covid-19 pandemic, Walensky said he was struck by “how little authority we have at the CDC to receive the data.”
“We want to get as much information and deliver informed decisions to the American public as possible. And once again, like with COVID-19, we’re again challenged that we as an agency don’t have the authority to receive that data.” We are working on that right now,” he said in a conversation with the newspaper Washington Post this Friday.
For example, Walensky pointed out, the CDC does not have the data on who has received the monkeypox vaccine and does not yet have the authority to collect that information.
The only publicly available data on monkeypox vaccines are in the weekly updates from the US Department of Health and Human Services that record how many doses have been distributed to each state.
In June, 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 information that states collect.
After soliciting comments from states, the CDC released a revised version of the agreement that focuses exclusively on vaccine administration data. The states are evaluating the document and some 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 vaccination 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. In addition, over the weekend, the World Health Organization declared the disease a public health emergency of international concern.
However, so far, monkeypox has not been declared a public health emergency in the United States. Country health officials said over the weekend that the situation is still being assessed. The secretary of Health and Human Services, Xavier Becerra, issued in a statement this Saturday in which he indicated that the United States is “determined to accelerate our response in the coming days.”
If the US declares a public health emergency over monkeypox, the measure could include an official requirement to report certain data, although it is more often used to move funds, Hamilton explained.
Although the public health emergency caused by covid-19 brought the obligation to report data to places of medical attention, such as hospitals, the same did not happen with the 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 send information.”
Now, even if the motivation is there, the existing infrastructure to do so can lead to a challenging process.
“We would love to have a regular, standardized process––even for when new diseases and conditions emerge––where there is at least a way for basic data to be automatically sent out of a state’s reportable disease system,” Hamilton said. . “But in the current infrastructure, that doesn’t exist,” she pointed out.
Instead, it is now a “very manual process” in which, for each case, states must enter all the information by hand or upload a file to the system that could lose some fields if it is not in the same format.
For example, evidence shows that monkeypox spreads primarily through prolonged physical contact, such as sex. People who are tested for the virus may be more willing to provide their doctor with a range of how many sexual partners they have had. But if the surveillance database requires a specific number for that question, the 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 underfunded, Hamilton noted.
“Believe it or not, 2020 was the first year that the agency received appropriations for a more integrated approach to managing disease surveillance data. And, of course, that was right around the time the pandemic hit.”
“We do not have enough detailed data on the cases”
Overall, a lack of data is hampering efforts to forecast 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.
The new CDC Outbreak Analysis and Forecasting Centerwhich was formally launched this spring, “has worked to better understand the monkeypox outbreak,” including how to most effectively optimize interventions such as vaccines.
“We anticipate that as the outbreak progresses we will be able to share forecasts,” the spokesman added.
Meanwhile, the supply of vaccines is far from meeting the demand. And it covers only a fraction of the population that the CDC recommended should receive it.
It is very likely that there is also an underreporting of cases.
Walensky said he anticipates a spike in cases in the coming weeks, for three main reasons: a simpler reporting form that makes it faster and easier for states to report cases, an increase in testing as commercial labs they have started offering recent tests and exposures that will start to show symptoms.
“It is true that we have some work to do – here and internationally – 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 current outbreak of monkeypox. monkeypox through education and more testing and access to vaccines – all priorities on which we have made dramatic progress,” the CDC said in a statement to CNN.
Brenda Goodman and Katherine Dillinger, both of CNN, contributed to this report.