Why Florida wants companies to turn over personal data about customers’ prescriptions

Business groups are raising privacy concerns after state regulators requested detailed data on Floridians’ prescription drugs, including patients’ names and dates of birth and their doctors.

The Office of Insurance Regulation is demanding the unusual trove of data from pharmacy benefit managers — health care industry middlemen that Gov. Ron DeSantis and others have blamed for skyrocketing drug prices and monopolistic behavior.

The companies were asked this year to turn over claim reimbursement data for every prescription drug they filled in Florida in 2024, possibly hundreds of millions of transactions.

The state did not answer when asked how many companies have complied. It said it wanted the data to better understand the companies’ practices.

Industry groups have pushed back, arguing that regulators haven’t given a good reason for why they need such detailed information.

The state’s demand “impermissibly violates the health privacy and security of millions of Floridians,” the American Benefits Council wrote to Florida Insurance Commissioner Mike Yaworsky in February.

The organization, which asked the state to withdraw its request, represents hundreds of the world’s largest corporations. Many of its members use pharmacy benefit managers to manage their employees’ health plans, but some are insurers and pharmacy benefit managers themselves.

Critics of pharmacy benefit managers said the concerns over patient privacy are reasonable.

But the Office of Insurance Regulation said the request was “in the best interest to protect consumers.” Officials also lashed out at critics.

“These ‘raised concerns’ are clearly from those who do not want to be regulated or have any oversight in their industry,” a spokesperson told Bloomberg News, which first reported news of the request.

The office wrote that it has had no data breaches, while the health care industry was “the most breached sector in 2024.” (Hackers stole HIV test results and other sensitive information on 729,699 Floridians at the Department of Health, a separate state agency, last year.)

Another industry trade group raised the prospect that the state is using the data to identify doctors providing illegal abortion services or transgender treatment for minors, but there is no evidence that’s the case.

The Office of Insurance Regulation told the Herald/Times it requested the detailed information as it probes the pharmacy benefit manager industry for the first time, thanks to a 2023 law that gives the state more oversight.

Taking on pharmacy benefit managers has been a DeSantis priority. He touted the 2023 legislation as an appeal to seniors during his failed run for president that year.

The data requested by regulators under the new law could be used to uncover the workings of one of the most opaque parts of America’s bloated medical system.

“It is important to be thorough in order to establish a baseline,” spokesperson Shiloh Elliott said in a statement.

Pharmacy Benefit Managers

Pharmacy benefit managers emerged in the 1960s when employee health plans began offering workers a new benefit: coverage for prescription drugs.

Before then, drugs were relatively cheap. Patients could get their prescriptions filled at nearly any pharmacy and pay out of pocket.

But when insurance plans began covering prescriptions, they turned to pharmacy benefit managers to process the claims and monitor the costs.

The benefit managers’ purpose was to drive down costs by negotiating with pharmacies and drug makers to get the best prices for the insurer and its patients.

The industry’s business model has changed drastically since then. Pharmacy benefit managers created their own pharmacies, merged with insurance companies and struck secret deals with drug manufacturers, driving up costs.

A New York Times investigation last year found that pharmacy benefit managers steer patients toward pricier drugs, charge steep markups on what would otherwise be inexpensive medicines and extract billions of dollars in hidden fees. Other state and federal regulators have made similar accusations in recent years as awareness of the industry has grown.

The three biggest pharmacy benefit managers are owned by CVS Health, Cigna and UnitedHealth Group and process 80% of all prescriptions in the United States.

“People keep calling them the middlemen,” said Antonio Ciaccia, president of 3 Axis Advisors, a consulting firm that investigates America’s drug supply chain.

“They’re the whole system at this point.”

Increasing oversight

DeSantis pushed the Legislature in 2023 to dramatically increase oversight of the industry. The law subjected pharmacy benefit managers in Florida to examinations every two years, starting in January this year.

It’s not unusual for regulators to see patients’ claim information. The Office of Insurance Regulation can already access detailed patient and doctor information for Medicaid recipients and employees on state health plans, for example.

But the state’s data demand to pharmacy benefit managers goes well beyond that, to include self-insured plans that business groups say are protected by federal law.

“There’s very clear Supreme Court authority that says the state can’t do that,” said Ryan Temme, a lawyer for the American Benefits Council.

The organization is not seeking legal action to stop the requests, however.

Protecting Privacy

Corporations have used concerns over patient privacy to fight regulatory scrutiny. In the early 2000s, they argued that creating a database of doctors who prescribe opioids would violate the doctor-patient relationship. The database was eventually created and helped identify doctors and pharmacies abusing the system.

When then-Attorney General Ashley Moody asked for access to the data in 2019 to sue pharmacies and drug companies for those abuses, lawmakers initially resisted on similar grounds.

The data Moody received did not include patients’ names or dates of birth. Patients were instead assigned random ID numbers.

Ciaccia’s company analyzed 350 million anonymized Florida Medicaid claims to produce a 2020 report that found pharmacy benefit managers were paying their own pharmacies much more to dispense drugs than their competitors.

He said he didn’t think it was critical for state regulators to have patients’ names and birth dates.

“I don’t think getting patient names is worth the trouble,” Ciaccia said.

Michael Jackson, a retired pharmacist and former CEO of the Florida Pharmacy Association, said concerns about privacy were fair.

“Any consumer would not want the government to have access to their confidential information,” Jackson said.

But as a former pharmacist who testified in support of Florida’s 2023 legislation, he also questioned pharmacy benefit managers’ motivations.

“What is it that the PBM industry doesn’t want you to know?” Jackson said. “Why are they hiding behind patient confidentiality?”

Herald/Times Tallahassee bureau reporter Alexandra Glorioso contributed to this report.

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