Death because of GREED? Wisconsin family speaks out against PBMs after the loss of their son

I remember reading a story- many years ago – about a young man who was a brittle type-1 diabetic. He had called his refill into his pharmacy- mid-week- to get refilled and while the Rx had indicated two refills remaining, it was over 1 yr old and the refills had expired. The pharmacist requested for more additional refills for this guy’s insulin from the prescriber.  This young man came in on a Saturday or Sunday to pick up his refill, but the prescriber’s office had never followed thru on authorizing more refills.  The Pharmacist informed the guy this and the Pharmacist declined to refill the guy’s insulin Rx. A day or so later this fellow DIED, just because no one did their job.

The last contract that I worked under was to help turn around a large company that provided nursing homes with respiratory and other needs. The owner had suffered a serious brain clot/stroke and was incapacitated and eventually died. One of the older employees was a type-1 diabetic and was having trouble affording his Insulin. He was “rationing” his insulin. I printed out this website https://www.rxassist.org/ and gave it to him. He came back to my office a few days later, telling me that he had contacted this website and they were going to send him THREE BOTTLES OF HIS INSULIN, and they were going to continue providing him his insulin going forward. I don’t remember if it was going to be sent to him free of charge or for a very inexpensive cost, that he could afford. Needless to say, he was very happy.

 

Wisconsin family speaks out against PBMs after the loss of their son

https://www.wjfw.com/news/wisconsin-family-speaks-out-against-pbms-after-the-loss-of-thier-son/article_489e5590-e003-11ee-ae20-fb51d5ece985.html

Cole Schmidtknecht was a 22-year-old young man living in Appleton, Wisconsin who loved video games and sports. His parents Bil and Shanon described him as an inspirational free spirit with a love for being heard.

“He was definitely one of a kind,” said Shanon.

Cole was diagnosed with severe asthma at only a year old. He had just recently moved out on his own with opportunities to chase his dreams, until his life was cut short earlier this year.

“January 10th,, he went to the pharmacy to get his prescription and was told it was no longer covered by his insurance,” said Shanon.

He was told there was no alternative option and no generic drug would be covered. Cole didn’t know how to respond and couldn’t cover the extreme out-of-pocket cost of his Advair inhaler on a $19/hour income. An inhaler-dependent patient left the Walgreens Pharmacy with no medication. Five days later he suffered an extreme asthma attack and was taken to the hospital. He arrived at the Emergency Room lifeless and spent the next six days in the ICU on a ventilator.  

“We were told he’s never going to wake up again,” said Bil.   

A generic version of Advair only costs $15-$20. What happened to Cole is happening all over the country, according to Hometown Pharmacy co-founder Dan Strause.

“Unfortunately, we see even the state plan now no longer will allow for the generic, they force people into the brand. Why? It’s not hard to figure out it must be about the profit margin. Unfortunately, they’re making people decide between life-saving medicine [and paying bills, even though] the cost of the actual item is so low,” said Strause.

“We find this absolutely wrong, its infuriating we should all be angry, and we hope you tell your legislators this needs to be addressed sooner than later,” said Strause.

Hometown Pharmacy had to close a location in St. Germain partially due to the influence of PBMs. A pharmacy benefit manager acts as a middleman between drug manufacturers and pharmacies.

In the last state legislative session, the pharmacy benefit manager regulation bill wasn’t brought to a vote. The bill was designed to create transparency in the system and prohibit the PBMs’ control over the pharmaceutical industry as a whole.

“We’re very frustrated that it never got a chance to be voted upon,” said Strause.

Strause said there is a lot of speculation as to why the bill didn’t make it to the floor.

“In politics, there’s a lot of moving parts and we believe that the recent vote for Wisconsin mapping is part of it, because there’s a lot of energy and focus with what the next election is going to be and of course elections are very expensive, and you have to fund those elections.

Strause believes that money from lobbying groups associated with PBMs have a strong influence on lawmakers.

“Unfortunately, it means that money and influence is a significant factor in us passing bills especially ones that affect all of our lively hoods and our health,” said Strause.

Bil and Shanon said after learning of PBMs and the tactics that cost them their son they were angry and decided it was time to speak up.

“I don’t want you to ever have to imagine, I don’t want anyone to ever have to experience this,” said Shanon.

Their goal is to share Cole’s story and raise awareness.  

“We just kind of feel like this is now our fight to fight for him. If we can prevent it for one other person just that alone would be a little solace or a little something I know we can never have our son back, he’s gone,” said Bil.

Cole’s situation is not the only one, and this could happen anyone. Everyday life saving medications are becoming inaccessible to patients who need them.

“We need our senators and our congressmen to help this process that’s why they’re there in office for our complaints, our concerns our needs and the games that are played are just costing lives,” said Bil.    

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