The Trump Administration recently proposed a rule that would fix the broken prescription drug rebate system and lower out-of-pocket costs for patients, including Medicare Part D beneficiaries living with chronic illnesses like epilepsy. The Epilepsy Association of the Big Bend (EABB) was created with the mission to support the more than 420,000 patients with epilepsy across the state of Florida, as well as educate and empower their families and communities. We are encouraged by this announcement and hope that steps will be taken to implement its recommendations for the sake of beneficiaries both in Florida and nationwide.
The drug rebate system that is currently in place in Part D features pricing and rebate distribution structures that benefit middlemen, rather than patients in need. Epilepsy, a neurological disorder of the brain characterized by sudden, brief changes in the brain’s electrical system called seizures, can cause severe disruptions in physical and mental function. This can be an utterly debilitating condition, and is typically managed by the use of anticonvulsant drugs. These medications are critical to the everyday functioning of many patients with epilepsy, and ensuring that they have affordable, reliable access to prescription medications is imperative to their quality of life.
As it stands now, middlemen – Pharmacy Benefit Managers (PBMs) and Part D insurers – are provided prescription drug rebates that result from negotiations with drug manufacturers. The problem is that many of these middlemen pocket the savings generated from these rebates, rather than passing them on to patients. The Administration’s proposed rule would fix this problem by ensuring that rebates are distributed directly to patients, bypassing middlemen altogether and guaranteeing that beneficiaries are paying as little out-of-pocket as possible. This would benefit patients, including those with epilepsy, by allowing them access to fair drug prices and promoting a more transparent rebate system.
EABB is committed to serving patients with epilepsy through direct human social services, advocacy, education, and supporting government actions that are helpful to beneficiaries. This rule would make a dramatic difference in the lives of the millions of Floridians who rely on Medicare for access to the medications they need.
Patients, especially those living with chronic diseases, must have reliable, affordable access to the drugs that keep them healthy. The proposed rule, if implemented, would put money back into the pockets of patients, increase transparency in the Part D drug-pricing system, and ultimately, encourage an environment that puts the health and wellbeing of some of the most vulnerable Floridians first.
Mandy Bianchi is currently the Executive Director of the Epilepsy Association of the Big Bend (EABB), a certified United Way Agency established in 1989 as a non-profit 501(C)(3). EABB provides various services to children and adults who have epilepsy and live in Florida, such as sponsoring medical treatments, helping with assistance applications, and helping educate communities about epilepsy, with a specific focus on the Big Bend region of the state.