Why won’t Florida, CDC release state’s breakthrough COVID data?

For more than two months, the Tampa Bay Times and other news organizations have been asking Florida for data that breaks down how many vaccinated people have been infected, hospitalized or died of COVID-19.

They are called “breakthrough” cases, data that would show how effectively the vaccine has protected Floridians — and how vulnerable the unvaccinated are.

But the Florida Department of Health has continually refused those requests, citing what public health and legal experts say are misplaced privacy concerns.

The Centers for Disease Control and Prevention also refuses to release that data, deferring to the state on whether to share it publicly.

It’s information Florida residents and researchers have repeatedly asked for. Now it’s crucial to determine how vulnerable Floridians are to omicron, the highly contagious variant that quickly became the dominant strain in the U.S.

“It’s the number one thing that people ask me for,” said University of South Florida epidemiologist Jason Salemi. That data may be more important than ever, he said, because it’s “especially pertinent to how omicron may or may not spread.”

Breakthrough cases demonstrate how effective vaccines are and can also show how that protection changes over time. Immunity from initial vaccinations wanes 3 to 6 months later, health experts say, so boosters are crucial to fighting off the new variant.

Nearly 2.6 million Floridians have contracted the coronavirus since the first vaccine was approved in December 2020, and nearly 42,000 have died from COVID-19 since then. But there is no public data that shows how many were unvaccinated. Nor is there public data that shows how many vaccinated people got breakthrough infections, and whether they had the added protection of booster shots.

For example, if Florida released breakthrough data, then we would know how many of the state’s 29,568 new COVID-19 infections — a 118 percent jump from the previous week’s caseload — and 194 new deaths reported Friday were vaccinated or unvaccinated.

While Florida won’t release breakthrough data, officials did reveal what some of that data shows: About 30 percent of Florida’s new COVID-19 cases found over a 30-day period were breakthrough infections in people who were vaccinated — but hadn’t received a booster shot — according to a Dec. 19 article in the South Florida Sun-Sentinel.

Salemi said that single data point doesn’t provide much insight: “One of the most common questions I receive is the extent to which receiving a full series of a COVID-19 vaccine is protecting me from infection, symptomatic illness and hospitalization.

“To really answer these questions, it would be valuable to have key COVID-19 metrics reported frequently and stratified by vaccination status and prior infection status.”

Answering those questions is more important than ever. A new study from Britain indicates the omicron variant may produce infections as severe as those from delta. The study has not been peer reviewed, but it includes a larger and more diverse sample of patients than an earlier South African study that suggested omicron infections may produce milder symptoms.

The CDC used Florida’s data to put together an analysis of breakthrough cases from 27 states and municipalities from April 10 to Nov. 20. It found that unvaccinated individuals are 10 times as likely to be infected with COVID-19 and 20 times as likely to die from the disease compared to fully vaccinated individuals who had a booster shot.

That’s proof that the vaccine works against the delta variant. But what about omicron? The CDC won’t release or publicize Florida’s data, so there’s no way to see how effective vaccines have been, and will continue to be, in the Sunshine State. The CDC says Florida must decide whether to release that data, and so far officials have refused to do so.

“In order to protect the personally identifiable health information (PHI) of Floridians, the department is unable to provide certain details regarding case information,” Department of Health spokesperson Jeremy Redfern said in an email to the Times.

He cites an exemption to Florida’s public access laws, which states that “studies concerning the epidemiology of disease of public health significance affecting people in Florida” are exempt from public records requests. However, the statute also states that such data is to be made public “only when necessary to public health.”

“If it’s not necessary for public health for us to know this kind of information now, when else is it necessary?” said Florida First Amendment Foundation executive director Pamela Marsh.

It’s another example of how Florida has gone from one of the most transparent states sharing pandemic data to one of the least. For 15 months, from the start of the pandemic in March 2020, the state released detailed data every day, allowing researchers and news organizations to examine trends.

But the state stopped doing so on June 4. Now Florida is the only state in the nation to release COVID-19 data once a week. That report is a document, not a database that can be analyzed. The state also continues to withhold information that was once public, such as vaccinations, infections and fatalities among nonresidents.”We’ve been fighting about this since the very beginning,” Marsh said.

The state does provide data to the CDC, and its weekly reports show cases and vaccinations by both county and age group. But researchers can’t access the actual data to perform their own analysis.

Protecting privacy is a legitimate concern, Salemi said. Intersecting too many variables like county, age and vaccination status can raise privacy concerns, he said, “but if we’re looking at this statewide, I don’t see where there could be any problems whatsoever.”

To figure out whether breakthrough cases and reinfections are occurring in Florida, Salemi said, outside experts and the public need data stratifying cases by not just vaccination status, but also when people were infected, or vaccinated, or boosted.

The lack of public data in the face of the spreading omicron variant makes it harder for local governments and private citizens to make their own safety judgements, he said.

“We were sitting pretty as the delta variant spread, and we’re sitting pretty again,” Salemi said. “We have to make informed decisions now, but we can only do that if we have the information.”

But just as Florida has restricted the public’s access to COVID-19 data, so too has it limited what local officials can do about curbing the spread of the virus. In May, Gov. Ron DeSantis and the Legislature restricted the emergency orders local officials issued in 2020 to reduce infections, such as mask and social distancing requirements. In November, state leaders barred school districts from imposing mask mandates and essentially banned public and private employers from requiring that employees get vaccinated.

Data transparency isn’t just a matter of public curiosity, Salemi said. It also helps public health experts fill in knowledge gaps that public agencies are unwilling or unable to fill.

The nearly 2-year pandemic continues while the state’s public health agencies are underfunded and understaffed, Salemi said. Florida Department of Health staffing fell by nearly 30 percent in the past 10 years. A Times analysis from the beginning of the pandemic found that the Florida Department of Health had among the fewest employees per resident and lowest average pay in the county.

“There is an overwhelming amount of responsibility on the epidemiologists at the state and county level,” Salemi said. “They are doing exceptional work. But we can be additional boots on the ground if we have access to this kind of data.”

Early in the pandemic, individual news outlets convinced the state to release data on long-term care and assisted living facilities, correctional institutions and schools. The Times is part of a coalition of media outlets that has been negotiating with state officials for greater access to Florida’s COVID-19 data since March. Those negotiations resulted in the state releasing genomic sequencing data and vaccination levels by ZIP code.

In September, state Rep. Carlos Guillermo Smith, an Orlando Democrat, filed suit against the Florida Department of Health and challenged its sole authority to determine what information is or is not in the public interest. The coalition of Florida media outlets, including the Times, submitted a brief to the court stating an “overwhelming public need exists for citizens to obtain government-held information informing personal and public health choices that literally bear upon life and death.”

Being able to view, analyze and understand detailed health data is essential as the pandemic continues with no end in sight, Marsh said. It’s also an important part of democracy.

“That’s the purpose of transparency,” she said. “We can trust what our government is doing only if they’re willing to be open and honest.”

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How to get vaccinated

The COVID-19 vaccine for ages 5 and up and booster shots for eligible recipients are being administered at doctors’ offices, clinics, pharmacies, grocery stores and public vaccination sites. Many allow appointments to be booked online. Here’s how to find a site near you:

Find a site: Visit vaccines.gov to find vaccination sites in your zip code.

More help: Call the National COVID-19 Vaccination Assistance Hotline.

Phone: 800-232-0233. Help is available in English, Spanish and other languages.

TTY: 888-720-7489

Disability Information and Access Line: Call 888-677-1199 or email DIAL@n4a.org.

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