Cole Schmidtknecht, 22, of Appleton, died Jan. 21, 2024 of complications of an asthma attack. His parents are suing Walgreens and OptumRx, alleging the companies were negligent in raising the cost of the inhaler Schmidtknecht needed to $539.19 and offering him no alternative when he tried to refill his prescription.
On Jan. 10, 2024, 22-year-old Cole Schmidtknecht went to his pharmacy, the Walgreens at 729 W. Northland Ave. in Appleton, to refill his inhaler prescription.
Diagnosed with asthma as a baby, Cole had been taking the inhaler daily as a preventive medication since he was about 13, his parents said.
At Walgreens, Cole was informed the medication he had long relied on for daily use was no longer covered by his insurance, and would cost him $539.19 out of pocket — more than eight times the maximum he had ever been charged for it, and around 15 times the highest price he’d pay after meeting his deductible.
It was more than he could afford. Cole left without buying it, leaving only with a rescue inhaler he was able to get with a $5 copay, his parents said.
Five days later, Cole had a severe asthma attack. His roommate drove him to the emergency room of ThedaCare Regional Medical Center in Appleton. By the time he arrived, he had no pulse and appeared blue, according to a lawsuit complaint.
Cole never regained consciousness. He died Jan. 21, 2024, at the hospital.
His family has filed a federal lawsuit against both Walgreens and OptumRx, a subsidiary of UnitedHealth Group, alleging both companies were negligent and bear responsibility for Cole’s death.
The lawsuit seeks financial compensation, for damages including the suffering Cole faced before he died and his funeral and burial expenses.
“Our primary goal is to obtain justice for the Schmidtknecht family, who suffered an unimaginable loss in the loss of their 22-year-old first-born son,” Helen Lawless, one of the family’s attorneys, said. “In order to do that, they have decided to bring a lawsuit against OptumRx and against Walgreens, both of whom contributed to Cole being unable to get a hold of a medication that he had been taking for years without incident that would have saved his life.”
But for Cole’s parents, Bil and Shanon Schmidtknecht, the lawsuit’s main purpose is to bring change to a system they say is flawed.
“There’s nothing that’s going to bring Cole back. ‘Justice’ is probably monetary at this point, or whatever you want to call that. But it’s not even about that,” Bil Schmidtknecht said. “If we can be successful in this lawsuit, maybe it’ll bring change.”
Walgreens declined to provide a comment, citing the ongoing litigation. OptumRx pointed to a statement the company released last year following Cole’s death, stating “we are saddened by Cole’s story and our sympathies are with his family and loved ones,” but that “formulary management and communications efforts that impacted this patient’s access to key asthma medication options were handled consistent with industry practice and the patient’s insurance plan design.”
As the lawsuit proceeds in federal court, Bil and Shanon Schmidtknecht say they hope to shed light on an issue that affects people all over the country.
“We need true change,” Bil Schmidtknecht said.
Lawsuit complaint says pharmacy benefit managers ‘dictate patients’ medications based on their own financial interests’
OptumRx is a pharmacy benefit manager, also known as a PBM, which acts as a go-between for UnitedHealth Group with drug companies and pharmacies.
According to UnitedHealth Group’s website, OptumRx “is helping reduce out-of-pocket costs for consumers, addressing the high cost of specialty drugs through integrated cost management and simplifying the pharmacy experience for our clients, care providers and consumers.”
The Schmidtknechts’ lawsuit alleges this is not the case.
“They say they’re trying to save you money, but they’re really collecting rebates behind the scenes,” Bil Schmidtknecht told the Post-Crescent.
Most of the largest PBMs are owned by health insurance companies or their parent companies. Like UnitedHealth Group owns OptumRx, CVS Health Corporation owns CVS Caremark, Cigna owns Express Scripts, and Humana owns Humana Pharmacy Solutions.
The result of this vertical integration means PBMs have significant power over the pharmaceutical supply chain — and can inflate medication prices for Americans, the Federal Trade Commission has warned.
In 2023, the three largest PBMs — CVS Caremark, Express Scripts and OptumRx — processed close to 80% of the approximately 6.6 billion prescriptions dispensed by pharmacies around the United States, according to a 2024 FTC report. The six largest PBMs manage close to 95% of prescriptions in the country.
The report cites a poll by the Kaiser Family Foundation that found nearly 30% of surveyed Americans reported rationing or skipping doses of medications due to high costs.
The Schmidtknecht family’s lawsuit complaint argues PBMs are an “oligopoly” that “dictate patients’ medications based on their own financial interests.” The complaint alleges that at the start of 2024, OptumRx discontinued coverage of the inhaler Cole used, Advair Diskus, and its generic versions, in a decision that was not medically motivated.
The complaint claims OptumRx’s 2024 formulary, which is a list of medications covered by insurance, only listed coverage of two newer inhaler brands, whose manufacturer had paid OptumRx “substantial kickbacks” to place those inhalers on the updated formulary and exclude Advair Diskus.
Further, the complaint alleges, Cole was never provided the 30 days’ notice required by Wisconsin law that his medication would no longer be covered under the new formulary, so he did not have the opportunity to request an exception to the formulary change through his doctor.
Employees at Walgreens then did not take any steps to help Cole get his medication, like asking Cole’s doctor to request an exception to the formulary or approve an alternative medication that was covered, the lawsuit alleges. The complaint accuses Walgreens of not adequately training staff on how to ensure patients understand all options open to them for pharmacy services, in part as a result of understaffing.
So when Cole went into Walgreens to get his inhaler just five days before his catastrophic asthma attack, his only option was to pay the $539.19 he could not afford or leave without his medication, his attorneys claim.
“The conduct of both OptumRx and Walgreens was deplorable,” Michael Trunk, another attorney representing Schmidtknechts in the lawsuit, said in a statement. “The evidence in this case will show that both OptumRx and Walgreens put profits first, and are directly responsible for Cole’s death.”
The lawsuit complaint was filed Jan. 21 in the U.S. District Court for the Eastern District of Wisconsin. No hearing dates have yet been set.
Court documents stating the lawsuit summons and complaint had been served to OptumRx and Walgreens’ parent company, Walgreens Boots Alliance, were filed Monday.
The Schmidtknecht family, from left to right: Dane, Cole, Shanon and Bil.
Schmidtknecht family seeks reform of health care system
Since Cole’s death, his parents have been vocal in efforts to reform PBMs. As their lawsuit has garnered national attention at a time of widespread scrutiny of the American health care system, Bil and Shanon Schmidtknecht have made appearances on media outlets like ABC News and “Good Morning America.”
“The drive that Shanon and I have to continue to try to get justice for him and make sure this doesn’t happen again is just coming right out of Cole,” Bil Schmidtknecht said. “He stood up for the little guys. He always felt he had to.”
In December, Cole’s story was shared at a Congressional hearing by Rep. Jake Auchincloss, D-Mass., in support of a bipartisan bill, nicknamed the “Pharmacists Fight Back Act,” that was introduced in July 2024 and sought to stop price-gouging by PBMs.
The bill did not pass during the 2023-24 legislative session.
Just months after Cole’s death, the manufacturer of the daily inhaler Cole took joined other drug manufacturers in announcing it would cap the out-of-pocket costs for inhalers to $35 a month. The price caps followed the launching of an investigation into inhaler prices by U.S. Senate legislators, including Sen. Tammy Baldwin, D-Wis.
Bil Schmidtknecht said he continues to work on grassroots efforts in Wisconsin for PBM reform.
As they seek justice, the Schmidtknechts remember their son as the young man he was: inquisitive, polite, quirky and adventurous, and a lover of gaming, music and movies.
Shanon Schmidtknecht said Cole’s friends described him as “the most fun guy to talk to.”
“They said … you could sit and talk with him for hours,” She said. “He was just very knowledgeable and curious.”
Contact Kelli Arseneau at 920-213-3721 or [email protected]. Follow her on X, formerly Twitter, at @ArseneauKelli.
This article originally appeared on Appleton Post-Crescent: Cole Schmidtknecht of Appleton couldn’t afford his inhaler, then died
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