One Angry Dad vs. the Drug Industry: The Fight for Cole and Millions More
Title: A Father’s Fight for PBM Reform After His Son’s Tragic Death
https://www.levernews.com/can-one-angry-dad-fix-the-drug-industry/
When 22-year-old Cole Schmidtknecht walked into a Wisconsin pharmacy in January 2024, he didn’t expect to be denied the asthma medication that had kept him alive for over a decade. But that’s exactly what happened.
His life-saving inhaler, Advair Diskus, was suddenly removed from his insurance formulary by OptumRx, one of the nation’s largest pharmacy benefit managers (PBMs). The price jumped from $80 to $539.18—a cost Cole simply couldn’t afford. He walked out of the pharmacy that night without his medication.
Five days later, he suffered a fatal asthma attack. He was rushed to the ICU, but never recovered. Cole died on January 21, 2024.
What Are Pharmacy Benefit Managers (PBMs)?
PBMs like OptumRx, CVS Caremark, and Express Scripts act as middlemen between drug manufacturers, pharmacies, and insurance plans. They claim to negotiate lower drug prices, but in reality, PBMs often:
Remove essential medications from formularies in exchange for higher rebates
Fail to notify patients or doctors of these changes
Drive up drug prices by prioritizing rebate revenue over patient safety
The result? Millions of Americans are blindsided at the pharmacy counter—just like Cole was.
This isn’t just a broken system. It’s a dangerous one.
Turning Tragedy Into Action: Cole’s Act
Cole’s father, Bil Schmidtknecht, is now leading a national campaign for PBM reform. Known online as “@AngryDadWI,” Bil is fighting for Cole’s Act, legislation that would require insurance companies and PBMs to:
Notify patients at least 90 days before any medication is removed or replaced
Ensure transparency around formulary changes and appeals
Hold PBMs accountable for dangerous, profit-driven decisions
In Wisconsin, current law mandates just 30 days’ notice—yet even that was ignored in Cole’s case. PBMs often hide behind federal ERISA protections, avoiding state-level accountability. Bil is now pursuing both legislative and legal action to challenge this abuse.
Inside the PBM Industry: Profits Over Patients
In 2023 alone, the top PBMs spent $17 million on lobbying to protect their business model. Their power is so entrenched that even the FTC's antitrust investigation has struggled to gain traction.
Why? Because PBMs are deeply embedded in government contracts—managing drug benefits for Medicare, Medicaid, TRICARE, and federal employees. Despite facing billion-dollar lawsuits and settlements, they continue to operate with minimal oversight.
That’s why grassroots efforts like Bil’s matter.
A New Model: Transparent PBMs
In a bold move, Bil joined AffirmedRx, one of the nation’s few transparent PBMs that rejects the rebate game. AffirmedRx:
Passes 100% of rebates to clients
Approves coverage decisions within 24 hours
Builds formularies based on medical need—not profit
Bil’s mission is clear: transform the system from the inside out, while continuing to advocate for policy change through PatientProtector.us and The March to a Million campaign.
Why PBM Reform Is Urgent
Cole’s story is not isolated. Every week, patients with chronic illnesses like asthma, diabetes, and cancer face unexpected denials, unaffordable prices, and life-threatening delays in care—all because of PBM decisions made behind closed doors.
Reforming this system isn't just about drug pricing. It's about:
Preventing unnecessary deaths
Restoring trust in our healthcare system
Reclaiming control from corporate giants
Take Action
🔹 Support Cole’s Act at PatientProtector.us
🔹 Share Cole’s story with your elected officials
🔹 Join the fight for PBM transparency and accountability
PBM reform isn’t just possible—it’s necessary. No family should have to bury their child because a corporation put profits over patients.
