Cole Schmidtknecht had dealt with severe asthma his entire life. The 22-year-old from Wisconsin had been using the same inhaler since he was a baby to keep his breathing under control. His insurance covered most of the cost, so he only paid around $35 to $70 each month when he picked up his prescription. But when he walked into his usual Walgreens in Appleton on January 10, 2024, everything changed in an instant. The pharmacy staff told Cole his insurance would no longer cover his Advair Diskus inhaler. If he wanted it, he would have to pay the full price of $539.19. Nobody had warned him this was coming. His doctor didn’t know either. Cole couldn’t afford to spend that much money all at once. So, his pharmacy gave him a different type of inhaler called a rescue inhaler, which only helps during an asthma attack. It doesn’t stop attacks from happening in the first place like his regular medication did. Cole went home that day without the medicine he really needed. All he had was his old rescue inhaler to help him get through each attack. On January 15, things got really bad. His roommate tried to rush him to the hospital, but Cole stopped breathing in the car on the way there. Doctors gave him CPR and tried everything they could, but he never woke up. His parents had to make the painful choice to turn off his life support six days later. When his father went to Cole’s apartment, he found the rescue inhaler sitting empty next to his bed. The system that let this happen needs fixing The reason Cole’s medicine suddenly cost so much has to do with companies most people have never heard of. These companies are called pharmacy benefit managers, and they decide which drugs your insurance will pay for. They don’t pick medicines based on what works best for patients. Instead, they choose drugs that give them the biggest payments from drug companies. Just three of these companies control 80 percent of all prescriptions in America. The company that took away Cole’s insurance coverage is called OptumRx. It’s owned by the huge health insurance company UnitedHealth Group. Last September, the Federal Trade Commission went after OptumRx and two other big pharmacy benefit managers in court. The government said these companies were making drug prices go way up on purpose so they could make more money. They were putting patients in danger just to boost their profits. Cole’s mom and dad are now suing both OptumRx and Walgreens. They say the pharmacy should have helped their son find another solution instead of just sending him away. They want new laws that force insurance companies to tell people at least 90 days before they stop covering a medicine. OptumRx says they told Walgreens to call Cole’s doctor about cheaper options that only cost $5. But that call never happened, and Cole never knew those options existed. @nbcnews Cole Schmidtknecht, 22, had insurance but couldn’t afford to refill his #asthma inhaler after the cost jumped from $70 to more than $500. Five days after his pharmacy visit last year, Cole had a severe asthma attack that, according to doctors, resulted in his death. His parents are pushing for legislation that would require a 90-day warning when an insurance company’s formulary is changed. They are also suing Optum Rx, the pharmacy benefit manager that took the medication off his insurance company’s formulary, and Walgreens, claiming that Cole did not get the required 30 days’ notice of the change, that his doctor wasn’t contacted and that the pharmacy didn’t provide Cole with any more affordable options. ♬ original sound – nbcnews – nbcnews After Cole died, the company that makes Advair said they would cap the price at $35 a month starting in 2025. Other inhaler makers did the same thing after people got angry about the high costs. But for Cole’s parents, none of this matters anymore. Their son should be turning 24 this year. His mom said his death “was so preventable and so unnecessary.”