As the Disneyland measles outbreak spread across the country, reporter Steve Reilly and I started looking for national school-level vaccination data to show pockets of where young children might be most vulnerable.
We couldn’t find it. And neither can the government agency tasked with controlling epidemics.
“It’s incredibly frustrating,” says Anne Schuchat, director of the National Center for Immunization and Respiratory Disease at the Centers for Disease Control and Prevention. Although the CDC offers guidelines, it can’t control how state health departments do the work — and strained budgets, staffing shortfalls and indifference means each state collects and reports the numbers differently.
Schuchat told a National Press Foundation panel last month that although data collection is improving, each year the CDC comes to the same conclusion: overall, it’s still pretty lousy.
“Diseases spread at the local level, not at the national or state level,” she says. “The reality is happening neighborhood to neighborhood.”
So what would happen in a disease outbreak more serious than measles? Hard to tell when so many states don’t provide the numbers. Only 13 states collect and report the data along CDC guidelines.
Steve and I contacted officials in each state to get their data. To date, we’ve collected vaccination rates from nearly 45,000 schools in 28 states. We anticipate we’ll get a few more, but we’ll fall far short of a 50-state look at vaccination.
For parents who want to know, California is the best at data collection, capturing figures for each school – broken out by specific vaccine and exemptions – and posts it all online.
Utah collects that same data, but only provides it with a FOIA request. In South Carolina, officials could provide only exemption rates – no word on what vaccines a kid had received. From Nevada we received a sample of the vaccination levels of 3% of the state’s kindergartners, collected from 50 random schools.
And that was in the states that admitted they even had the data. Indiana officials said they didn’t collect it. Ohio officials said it didn’t exist, and when we showed them the web form they use to collect it from each school, they stopped responding to us. People in Maine said they reported the numbers to the CDC and then destroyed the data — even though the whole purpose of collecting it is so the state can identify at-risk communities.
In Hawaii, the Department of Health said residents might get angry at schools if they knew the vaccination rates at some of them, and said that was reason to withhold the numbers.
But there’s some hope for the future. Iowa health officials said USA TODAY’s efforts convinced them there was public interest in vaccination levels; they plan to publish the school data on their website annually from now on. And Schuchat said with renewed research and media interest this year, the CDC is leaning harder on states to fall in line to collect and report out their numbers.
“We’ve been stressing with the states the need to gather this data in a consistent way,” she says. “It’s of increasing priority to us – we’re pushing it more now.”