Cole Schmidtknecht, a 22-year-old from Wisconsin, tragically died from an asthma attack after being unable to afford his inhaler, Advair Diskus, which had skyrocketed in price from under $70 to over $500. Cole visited the pharmacy for a refill but left with only a rescue inhaler, meant for immediate relief. Just five days later, he suffered a severe asthma attack, collapsed, and never regained consciousness. His parents, Bil and Shanon Schmidtknecht, attribute his death to a flawed healthcare system wherein pharmacy benefit managers (PBMs) dictate drug prices and formularies to maximize profits through rebates from pharmaceutical companies.
The Schmidtknechts are pushing for legislative changes that would require a 90-day notice for formulary changes and are suing Optum Rx—the PBM that removed Cole’s inhaler from coverage. They argue that the law was violated because Cole received no prior notice, and his doctor was not informed about alternative treatments, which they believe contributed to his death.
Immunologist Dr. David Bernstein emphasized that a rescue inhaler alone is insufficient for severe asthma cases. In response to the lawsuit, Optum Rx extended condolences but claimed that federal law prohibited the case from state court. They also stated that alternative medications were available with a lower copay, though the Schmidtknechts contest this.
The couple sees their fight as a pursuit of justice not only for Cole but for broader systemic change, highlighting the lack of transparency in PBM operations and emphasizing that patients and doctors often remain in the dark about medication coverage decisions. They remember Cole with tattoos that symbolize their resolve to advocate for healthcare reform.
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