Op-ed authored by Stephanie Hengst, as submitted to the Orlando Sentinel.

Earlier this month, Gov. Ron DeSantis signed into law a bill making pharmacy benefit managers (PBMs) more accountable. However, despite this bill being lauded as the most comprehensive reforms in Florida’s history, there was a notable gap in the legislation: this bill failed to include critical patient protections.

Patients with serious, chronic conditions, such as HIV, multiple sclerosis, cancer and hemophilia, often endure a long and challenging medical journey with their providers to find the best treatment for them.

Copay assistance programs help patients with rare and chronic conditions afford high copays so they can have access to the treatments that keep their conditions under control and keep them alive. Often, there is no generic brand equivalent for these lifesaving treatments. Copay assistance is a vital lifeline for patients with chronic conditions.

Unfortunately, copay assistance doesn’t always benefit the people who need it most: the patients. PBMs have implemented schemes called copay accumulator adjustment policies and copay maximizer programs to profit from copay assistance, at the expense of patients. These schemes don’t count copay assistance towards a patient’s deductible or out-of-pocket maximum; instead, the PBM keeps the money from the copay assistance for their bottom line.

When the copay assistance is diverted from counting toward their out-of-pocket costs, patients who are reliant on this assistance to afford their medication are then burdened with unreasonable costs, and they often make choices like rationing their doses or stopping necessary treatment.

Furthermore, when patients are unable to adhere to their prescription drugs due to PBMs driving up out-of-pocket costs, it directly undermines the relationship between patients and their physicians.

Patients use the treatment that works for them and that their provider has determined is best for them considering their individual, complex medical circumstance. It is unfair to both the patient and their physician for someone behind a computer screen to determine which medication they can and can’t acquire. Additionally, a patient goes through step therapy and prior authorization, gaining approval from the health plan or PBM to use their medication, only to be hit with a copay accumulator adjustment policy.

Vulnerable patients have no idea this is happening to them until it is too late. In a new report from The AIDS Institute, Florida received a D grade for failing to protect patient assistance because 75% of marketplace plans have copay accumulator adjustment policies. These policies are ubiquitous in Florida marketplace plans and pose a direct threat to the health of the most vulnerable Floridians.

As an advocate for patients, I hear from people all the time that they are frustrated with insurers and PBMs for standing in the way of getting their prescribed treatments. They often ask me, “How can this be legal?”

In 19 states, including Georgia, Louisiana, and most recently Texas, legislators determined these practices are not legal. This year, Florida had an opportunity to stop these tactics and stand up for patients. Legislation was introduced in the Florida State Senate by Sen. Tom Write (R) and by Rep. Lindsey Cross (D) in the House. However, by failing to include this bill in the governor’s PBM reform package, state legislators made a decision not to protect patients from these harmful practices.

Congress can answer the call of patients and protect millions of Americans living with chronic conditions through the bipartisan HELP Copays Act. I applaud Rep. Bill Posey (R-Melbourne) for supporting this legislation. The HELP Copays Act would protect all Floridians, regardless of whether they have an employer or marketplace health plan. It’s time for our policymakers to stand up to PBMs and protect patients from their predatory schemes.

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