Grieving parents couldn't understand how their son died of an asthma attack. Then they found out how much his meds now cost
Driving away from the pharmacy to pick up a standard refill of her husband's asthma medication, Shanon Schmidtknecht's head was spinning.
Shanon and her husband, Bill, were reeling from the death of their 22-year-old son, Cole, who died two weeks earlier after suffering a severe asthma attack.
What Shanon and her husband didn't realize until that day in the pharmacy was that Cole's routine medication was no longer covered by his provider and had jumped from $66 to $539.
'It was weeks later that we started to be able to put pieces together,' the mom told The Independent.
Bill and Cole worked for the same company and had the same health insurance provider, Shanon explained. They were also on the same medication. But, Cole's has spiked and left him unable to pay for his needed drug - and dead three days later.
While refilling Bill's routine asthma prescription at their local pharmacy in Poynette, Wisconsin, Shanon noticed a post-it note on display regarding the medication. 'I saw right away. It said, 'No longer covered by insurance,'' she recalled. 'That was obviously clue No. 1.'
'That was a turning point day for us,' Bill added.
Shanon praised the pharmacist who helped her with Bill's medication that day and made sure that they left with a suitable replacement. 'She made a phone call, she figured things out and she gave us an alternative for Bill that same day so that I left with something for my husband to breathe,' Shanon recalled.
'Cole, unfortunately, didn't get that.'
As Shanon drove away from the pharmacy, it hit her. 'My mind was just spinning, and I was like...this is it. This is what happened to my son.'
The couple made headlines across America this week after they went public with a lawsuit against Walgreens and pharmacy benefits management company OptumRx, a subsidiary of United Health Group. They allege that Cole died last year because he couldn't afford the sudden $500 spike in his asthma medication, Advair Diskus, when it was suddenly no longer covered by insurance.
Cole suffered from asthma his whole life.
He stopped at a Walgreens pharmacy in Appleton on January 10, 2024, to refill his prescription and was told the cost had jumped from $66 to $539 out-of-pocket. In their lawsuit, the couple alleges that Walgreens pharmacy staffers failed to offer Cole any workarounds to obtain his usual medication.
They told him there were no cheaper alternatives or generic medications available, they didn't contact OptumRx to request an exception on Cole's behalf, and they didn't ask Cole's doctor to request an exception for him, his parents contend.
Unable to afford the new cost, Cole left the pharmacy without the medication.
He tried to manage his condition with his rescue inhaler but suffered a fatal asthma attack days later.
Walgreens said it cannot comment due to pending litigation. The Independent has reached out to OptumRx for comment.
OptumRx said in a statement last April that a review of Cole's claims showed that on the day he visited the pharmacy, he did buy a different asthma medication, generic Albuterol, for a $5 co-pay on Jan. 10 — a medication that it says he also obtained in October 2023. His case was handled 'consistent with industry practice and the patient's insurance plan design,' the company said.
Michael Trunk, an attorney representing Shanon and Bill, however, said that the $5 generic prescription Cole filled was for his rescue inhaler, not the Advair Diskus inhaler that he took daily.
It wasn't until Shanon and Bill arrived at the hospital on January 15, 2024, and spoke to Cole's distraught roommate that they discovered their son had been going without his asthma medication for days.
'His roommate had said, 'You know, he hasn't had his [Advair] there.' That's the first we had heard of it. His roommate then informed us, 'we went to try to pick it up, and it was, like, $500.' We were trying to wrap our brains around how did this happen? What is going on?'
The family spent six heartbreaking days at their son's bedside while he was on life-support holding out hope before doctors delivered the news they had been dreading.
'The neurologist came in and told us...there was no hope, there was no brain activity, that he had gone too long without oxygen and that he would…he would not wake up,' Shanon recalled.
Cole's life-support was turned off on January 21, 2024.
At the heart of the couple's lawsuit is reforming pharmacy benefits managers, which act as intermediaries between health insurance companies, prescription drug companies and pharmacies. Optum Rx, the PBM named in Cole's case, services prescription claims for more than 66 million people across the U.S., according to the lawsuit.
The Schmidtknechts allege that OptumRx violated Wisconsin law by raising the cost of the medication without a valid medical reason and failing to provide 30 days' advance notice of drug price increases.
Trunk, one of the family's attorneys, told The Independent that the goals of the suit are 'corporate responsibility and corporate accountability for both OptumRx and Walgreens.'
'The claims in the suit will hopefully lead to the deterrence of this type of conduct by Walgreens, OptumRx and other companies like those companies,' he said. 'Another part of the lawsuit that I know Bill and Shannon feel strongly about is affecting change within those companies, getting them to follow their own policies that they didn't follow up here.'
He added: 'To follow the law and also to change their policies to make sure that something like this never can happen again.'
Cole, big brother to 18-year-old Dane, was described fondly by his parents as curious, knowledgeable, and funny.
He was a dedicated Milwaukee Bucks fan, an avid gamer and had a dry sense of humor.
'Ever since he was a young boy, he definitely had thirst for knowledge, and wanted to know anything and everything about everything...unless it was school related,' Shanon said. 'He had that thirst for knowledge. He was funny.'
The lawsuit has been both a distraction and a reminder of their profound grief.
But somehow, while Cole was in hospital on life-support, they managed to find a glimmer of light during one of the darkest weeks of their lives.
'That was another turning point, because we also learned something about him,' Bill said. ' That he was an organ donor.'
Bill said that he was comforted by the fact that his son would live on through others and save lives. 'Knowing that Cole wanted that...that he signed up to volunteer, it actually was a positive.'
The couple are both determined, one way or another, to create meaningful change.
'Going back to that day that I left that pharmacy, Bill and I stood in the living room and we just said, 'This has to change.' This cannot happen to anyone else,' Shanon said.
'So whether that is through this lawsuit, whether that through is through the PBM reform efforts that primarily Bill is doing, justice for Cole means justice for all of us as Americans, for healthcare access and access to affordable medication.'
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