As a mother, few experiences are more heart-wrenching than watching your child go through a seizure. My daughter Delia has had hundreds of seizures throughout her 17 years of life. We feel fortunate that her current treatment is effectively keeping her seizures under control, though we remain acutely aware that this stability can change in an instant.

Over the years, she has explored numerous medications and various medical therapies. Currently, her treatment plan includes a medication available only in brand-name form, which unfortunately comes with a staggering price tag. It’s disheartening that the financial burden of her necessary medications should ever compete with the basic cost of living. With my husband’s insurance featuring a high deductible, meeting that amount each year is an uphill battle. Each month, I approach the pharmacy counter, heart in my throat, as the cashier tallies up our total. Will it be manageable this time? Or will we face the heart-wrenching choice between filling her prescription and paying our other bills?

The uncertainty we navigate isn’t limited to her seizures; it permeates through our health care system, where discounts and rebates that should benefit patients often do not reach us. This is why the proposed bill LD 1053, “Act to Ensure That Rebates from Prescription Drug Manufacturers Are Passed on to Patients at Pharmacies,” represents not just legislation, but a crucial lifeline.

Currently, pharmaceutical manufacturers dispense billions in rebates to pharmacy benefit managers (PBMs) and insurers. While these rebates are meant to lower medication costs, they frequently end up lining the pockets of middlemen, rather than alleviating financial strains for families like ours. The rebate cards we receive from pharmaceutical companies may help cover a portion of our prescription costs, but they do nothing to alleviate the burden of our high deductible. Consequently, while insurance benefits from these rebates, I am still left to navigate the financial aftermath once the rebate card expires.

Despite these rebates, families are still confronted with exorbitant prices at the pharmacy counter. For those of us managing chronic conditions, the struggle to ensure that our loved ones receive the medications and treatments they need should not be a source of stress. It is unacceptable that pharmacy benefit managers profit from my daughter’s health while I bear the financial weight of her medications once the rebate runs out. This double-dipping must cease. The savings should flow to families like ours, reducing our out-of-pocket expenses.

Passing this act would mean that the financial relief intended for patients reaches us. It would transform each pharmacy visit from a moment of anxiety over affordability to one of assurance that we can keep our children healthy and safe. This is about fairness, transparency and, most importantly, creating a system that prioritizes people over profits.

To lawmakers considering this vital bill: imagine if it were your child standing at that counter, weighing household expenses against imperative medications. This legislation transcends mere economics — it embodies a moral imperative. It’s about ensuring that the relief offered by pharmaceutical companies truly reaches the families who need it most.

The current system is failing us, but we have the chance to rectify it. Let’s commit to making sure that rebates fulfill their intended purpose — supporting patients, not enriching corporate profits. The health and well-being of our children depend on it.