Cole Schmidtknecht, 22, used a maintenance inhaler to keep his asthma under control.
When he went to the pharmacy on January 10, 2024, however, he was shocked to learn that the cost of his medication, previously under $70, had skyrocketed to over $500.
Unable to afford the price increase, Cole left without his Advair inhaler, a medication that played a crucial role in preventing his asthma attacks.
Five days after going to the pharmacy, he suffered a severe asthma attack that caused him to stop breathing. Despite being rushed to the hospital, he never regained consciousness and passed away.
His official cause of death was listed as asthma.
His parents, Shanon and Bil Schmidtknecht, blame his death on a broken system that allows companies to raise medication prices without warning.
Ultimately, the ones responsible for the price hike are pharmacy benefit managers (PBMs). They act as behind-the-scenes middlemen, determining which medications are covered by insurance and at what cost.
According to Gerard Anderson, a professor of health policy and management, PBMs add or remove drugs from insurance formularies through a process that boosts their profits by increasing “rebates” from drug manufacturers.
Cole Schmidtknecht’s parents describe the situation as “insane,” as the system isn’t broken. Rather, it’s “designed to work this way.”
Now, the Schmidtknechts are advocating for legislation that would require insurance companies to provide a 90-day notice before making changes to a drug formulary.
They are also pursuing legal action against OptumRx, the PBM that removed Cole’s preventative inhaler from his insurance coverage, as well as the pharmacy, which they say failed to offer their son an alternative when he couldn’t afford the medication.
According to the lawsuit, Cole did not receive the required 30-day notice about the change in his medication coverage.
His doctor was also not informed, and the pharmacy failed to offer a more affordable alternative.
His parents said he was only given a rescue inhaler, which is meant for short-term relief during an attack. Unlike Advair, it’s not strong enough to prevent severe asthma episodes, episodes that can send individuals to the emergency room.
In response, Optum Rx offered its “deepest condolences” to the family. The company stated that three alternative medications were available for a $5 copay, but noted that they required the pharmacy to contact Cole’s doctor, which did not happen.
If Cole were still alive, he would be 24 today. Reflecting on the life he could have lived and all the things he might have accomplished, his parents nearly broke down.
Shanon described his death as “so preventable and so unnecessary.”
