Florida Push for Citizens' Prescription Data Sparks Privacy Concern

Florida's insurance regulator is facing concerns over patient privacy and government overreach after requesting personal and prescription information from potentially millions of people.

The Florida Office of Insurance Regulation (OIR) called for the data from pharmacy benefit managers (PBMs), which act as third-party intermediaries between pharmacies, insurance companies or employers and drug manufacturers. PBMs also determine which medications will be covered by health insurance plans, as well as the cost of prescriptions.

Why It Matters

The data request is part of plans to investigate PBMs, which have long faced scrutiny over allegations that they drive up costs for patients and employers while acting as middlemen for drug manufacturers and pharmacies.

What to Know

The Florida Office of Insurance Regulation sent letters to PBMs seeking data such as people's names, dates of birth, and prescription details, Bloomberg first reported on February 28.

Shiloh Elliott, a spokesperson for Florida's OIR, told Newsweek that the data request was part of the "normal course of business in the examination process" of PBMs.

The regulator is seeking the information to ensure PBMs comply with a law signed by Florida Governor Ron DeSantis in May 2023, The New York Times reported. The Prescription Drug Reform Act aimed to hold "pharmaceutical middlemen" accountable and ensure transparency in prescription drug price increases.

Newsweek has contacted Governor Ron DeSantis' office for comment via email.

The request for data has sparked concerns about patient privacy and what the regulator intends to do with the information.

Michael Jackson, a retired pharmacist and former CEO of the Florida Pharmacy Association, told the Miami Herald that consumers "do not want the government" to have access to their private details.

Rosa Novo, the administrative benefits director for Miami-Dade County Public Schools, told The New York Times that while she supports efforts to lower prescription prices, her doctor is the "only one who should know" her personal details and medication history.

The American Benefits Council, a Washington, D.C.-based association of financial institutions and large companies, also wrote to the Office of Insurance Regulation, asking it to withdraw its request for people's data. The letter says the regulator's request "impermissibly violates the health privacy and security of millions of Floridians," without specifying reasons for such an action.

Elliott previously told Bloomberg and The New York Times that objections to the data request are coming from those who "do not want to be regulated or have any oversight in their industry."

In 2023, nearly 80 percent of all prescription claims in the U.S. were processed by PBMs owned by three companies: CVS Health, Cigna and UnitedHealth Group.

Sharona Hoffman, a health law and privacy expert at Case Western Reserve University, speculated that Florida officials could use the data to target doctors providing illegal abortion services or transgender treatment. There is no evidence to support this claim.

During DeSantis' time in office, Florida has passed laws restricting abortion access and transgender care.

What People Are Saying

Shiloh Elliott, a spokesperson for Florida's OIR, told Newsweek on Tuesday: "The data is being requested as part of the normal course of business in the examination process; examinations that will be performed by OIR's internal examinations staff. This is the first time that the OIR is able to perform examinations on PBMs, so it is important to be thorough in order to establish a baseline. OIR does not provide information relating to active investigations or examinations, and thus information received in conjunction with such data calls is not subject to public records requests. It is not uncommon for regulators to see patients' claim information, and the OIR already has access to detailed patient/doctor information for Medicaid recipients and employees on state health plans."

Michael Jackson, a retired pharmacist and former CEO of the Florida Pharmacy Association, told the Miami Herald: "Any consumer would not want the government to have access to their confidential information. [However,] what is it that the PBM industry doesn't want you to know? Why are they hiding behind patient confidentiality?"

Joe Shields, managing director of Transparency-Rx, a group of pharmacy benefit management companies advocating for fair drug prices, told Bloomberg: "The notion that big government is going to be in anybody's medicine box is not something that I think is reflective of where most Americans are at."

Sharona Hoffman, a health law and privacy expert at Case Western Reserve University, told The New York Times: "You don't need such granular patient information for purposes of oversight. You have to worry: Is the government actually trying to get information about reproductive care or transgender care or mental health care?"

Florida Governor Ron DeSantis said in a May 2023 statement: "PBMs and Big Pharma have managed to escape the public eye and work in the shadows for far too long. I'm proud to sign a bill that takes the reins back from these health care monopolies while empowering consumers."

What Happens Next

The Office of Insurance Regulation said in a previous statement it will continue to request data "in the best interest" of consumers.