Q&A: How Tragedy is Forcing Change in the PBM Industry

Recent narratives on pharmacy benefit manager (PBM) practices have caused a majority of pharmacy and patient advocates to call for reform toward these prescription drug middlemen. While their practices have led to overarching concerns around US drug prices and their complex mechanisms, they have also led to tragic stories among average Americans looking to access life-saving medications.

“It became my life mission to get justice for my son, Cole, and making sure no one else dies. I quit my job [and] started Patient Protector,” Bil Schmidtknecht, founder of Patient Protector and director of patient experience at AffirmedRx, told Drug Topics. “We started our advocacy campaign, making our voice the voice of the patients. We stand for educate, enrage, and engage, and we do those things with our organization.”

Schmidtknecht, who tragically lost his son to an asthma attack after an Advair Diskis steroid was dropped from his insurance coverage, has since dedicated his life to patient advocacy. From starting his own grassroots movement to working with other pharmacy nonprofits, he has since used his son’s story to spread the word about the need for change. He’s also worked with new-wave PBMs specifically emphasizing transparency and helped advocate for PBM reform bills across multiple states.

In part 1 of our interview, Schmidtknecht shared his son’s story and the immediate advocacy campaigns he got involved with after. | image credit: Kamitana / stock.adobe.com

In part 1 of our interview with Schmidtknecht, he shared Cole’s story and the immediate advocacy campaigns he got involved with after. Learn about this tragic yet eye-opening story that underscores several pharmacy advocates’ calls for industry-wide reform.

READ MORE: Q&A: PBM Reform, Other Policy Considerations to Combat Pharmacy Deserts

Drug Topics: Can you start by sharing your son Cole’s story and how he was impacted by PBM practices?

Bil Schmidtknecht: My son, Cole, was 22 years old. He was living on his own in Appleton, Wisconsin. He was an asthmatic, had been an asthmatic for his entire life, essentially. From a very young age, we noticed it, and we taught him how to deal with it. When Cole moved out on his own, he was moved in with his best friend and enjoying life like a 22-year-old would. On January 10, 2024, Cole went into a chain pharmacy in the Appleton area to refill his asthma medicine, which was an albuterol rescue inhaler and Advair Diskis, which was this steroid medicine. Getting to the counter, he presented his prescriptions per se, and they handed him his rescue inhaler. It was $5. When they handed him his Advair Diskis, he was informed that it was no longer covered, and it would cost him $539.19. Cole, at that time, made a decision to leave the pharmacy without his Advair. That was almost as much as his rent every month. He was there with one of his friends, and he showed the price to his friend, and then they just left.

Well, 5 days later, Cole had an asthma attack. He reached out to me and let me know he's having his asthma attack. He was asking, ‘What should I do?’ I said, ‘Get to the hospital, call 911, whatever it might be.’ But he was worried about his insurance. I said, ‘Don't worry about your insurance, get to the hospital, and we will go from there. We'll figure it out.’ That led to him going to the hospital. His friend gave him a ride, and on the way to the hospital, he lost consciousness and showed up to the hospital with no pulse. They were able to resuscitate him at the hospital. We got some phone calls. My wife and I and Cole's younger brother got to the hospital in Appleton. It was a 3-and-a-half, 4-hour drive because it was an ice storm. Long and short of it, he had suffered an asthma attack, cardiac arrest, and got put on life support on that night. He died 6 days later on January 21st from an asthma attack, essentially. That's Cole’s story. It's tragic, it's pretty clear cut.

Drug Topics: Following the events surrounding your son Cole, what were the next steps for you getting involved in the patient advocacy space?

Bil Schmidtknecht: It became my life mission to get justice for my son, Cole, and making sure no one else dies. I quit my job, started a patient protector organization, called Patient Protector. [A local pharmacist] and some various staff members got involved with us—all volunteer, nonprofit, grassroots, no pharma money, nothing. We started our advocacy campaign, making our voice the voice of the patients. We stand for educate, enrage, and engage, and we do those things with our organization.

That led into a lot of public service announcements with the PBM Accountability Project. NCPA, the National Community Pharmacists Association, was supportive in that mission, and I help their missions now. [We’re] meeting with legislators, the FTC, DOJ, all this stuff, traveling around the country, advocating. As I said, I quit my job. I did have to find employment because this wasn't generating money itself. I was able to get hired by a pharmacy benefit manager actually. To be clear, it was a transparent one. At this point, it's been a good job. They've supported my advocacy, getting out in public, going around the country, speaking PBM reform.

I've worked in Illinois, Texas, Oregon, Missouri, all kinds of states. We touch about almost 10,000 pharmacies with our social media, our docu-series The Modern Medical Mafia. We make it easy for a pharmacist to fight [for] PBM reform, if you want to say. It's just been a whirlwind. We've been on major news outlets, from NBC to ABC to Fox, you name it. We've been there sharing our story.

[We’re] meeting with legislators. One of the biggest missions that I've done, personally, for myself on this is in the state of Wisconsin, working with the Senate president. They introduced a bill this year called Cole’s Act. It's fighting against the PBMs, creating better patient access, and saving the local pharmacies. That's essentially it, [although] there's a lot more to it. I've done a lot of visits and talked education with the legislators, and it's moving through the process as we speak. On August 21st, actually, there was a Senate committee meeting for the health and aging committee, and they passed Cole’s Act 5 to 0, unanimously. Now, it's moving on to the next step.

We've made some good progress in Wisconsin. We have a lot of work to still do, because we've seen this before in Wisconsin, as the last round of PBM reform, before I was involved, essentially, it wasn't this easy back in the day. There wasn't so much activity around PBMs and their practices and their tactics. Really, we have nothing for PBM reform in Wisconsin. But we're back at it again and we're prepped and ready. We got voices, we've got momentum. We're playing a very strategic chess game, and it sucks that we have to do this to get a law passed that will save people's lives, but we're on our way. We're one step closer and just a couple steps away.

READ MORE: The 3 Types of PBM Reform Aiming to Change the Pharmaceutical Market

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