Donna Sabatino: Florida can decrease patient costs for medications

Medication concept
It’s a challenge our state policymakers can fix.

Almost 500,000 Floridians are living with chronic illnesses such as lupus, epilepsy, or HIV.

Thankfully, many of these chronic conditions can be managed and treated to ensure all Floridians maintain a high quality of life. Unfortunately, the cost of these medications poses an affordability challenge to many in our state and nationwide, but it’s a challenge our state policymakers can fix.

In the 2023 Legislative Session, Gov. Ron DeSantis and the Florida Legislature worked hard to increase accountability and transparency around pharmacy benefit managers, or PBMs. While this work was necessary and important, we also need to work toward expanding this effort to include patient-centered policies that will reduce out-of-pocket costs for patients in need of these lifesaving medications.

As a nurse and advocate for people living with HIV/AIDS, hepatitis, and other chronic diseases, leader of the Florida All Copays Count Alliance (FLACCA), and Director of state policy and advocacy for The AIDS Institute, I am deeply concerned about the use of copay accumulator programs. Copay accumulators are management protocols that health insurance companies and PBMs utilize to prohibit copay assistance from counting toward patients’ health insurance deductibles and out-of-pocket maximums while directing those funds to their own bottom lines. Today, nearly 90% of Marketplace insurers have these harmful management protocols in place.

To put it simply, insurers and PBMs are double-dipping by collecting the payments made by the patient as well as keeping the payments covered by copay assistance. All financial assistance is applied to the purchase of a patient’s prescription, whether from a manufacturer’s copay card, a nonprofit program, or financial assistance from a relative, needs to be applied to the patient’s deductible or out-of-pocket spending cap.

Shifting expenses to the patient by not counting this financial assistance causes them to abandon their medicine, jeopardizing their health and ultimately impacting their quality of life. Patients must make tough choices between paying for necessities like rent and food or paying for their prescriptions. We see this in practice — over 40% of patients did not fill their prescriptions when out-of-pocket costs hit $75-$125, and 70% of patients left the pharmacy without their medicine when out-of-pocket costs hit $250.

Thankfully, Sen. Tom Wright and Rep. Lindsay Cross are championing a solution, Senate Bill 228, and House Bill 363. This legislation aims to help increase patient’s access to their life-saving medicines and work toward improving Floridians’ health and overall quality of life by banning copay accumulator practices presently in place by insurers and PBMs. Florida would be the 20th state to ban copay accumulator policies. A ban on copay accumulator policies in Florida will help insured patients reach their plan deductibles and out-of-pocket maximums fairly, reduce out-of-pocket patient costs at the pharmacy counter, keep patients out of emergency departments, and improve overall health outcomes across the state.

The AIDS Institute is proud to lead the Florida All Copays Count Alliance joined by 35+ chronic disease patient advocacy organizations working hard to ban copay accumulator programs in the state. Collectively, we urge Gov. Ron DeSantis and the Florida Legislature to stand with Floridians by prioritizing patients and co-sponsoring this legislation during the upcoming 2024 legislative session. Patients are already grappling with severe chronic diseases — they should not have to worry about this increased burden of accessing medications.


Donna Sabatino is the Director of State Policy and Advocacy at The AIDS Institute, a national nonpartisan, nonprofit organization headquartered in Tampa, promoting action for social change through public policy, research, advocacy, and education. The AIDS Institute is a lead partner of the Florida All Copays Count Coalition.

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One comment

  • Lisa Barr

    January 25, 2024 at 10:47 am

    Thank you Donna Sabatino and the AIDS Institute for your leadership on this important issue to the patients we serve and all Floridians!
    We support Sen. Tom Wright and Rep. Lindsay Cross for championing a solution, Senate Bill 228, and House Bill 363.
    Thanks again Donna!

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