Cole Schmidtknect was only 22 years old when he died.
In January, Cole—who had been diagnosed with severe asthma at age 1—went to the pharmacy to pick up the inhaler he used to manage his condition. There, he learned that his inhaler was no longer covered by his insurance; there was no alternative, and no generic option.
Five days later, Cole had a severe asthma attack. He went into cardiac arrest on the way to the hospital, spent 6 days in the intensive care unit, and died on January 21, 2024.
At the 2024 National Community Pharmacists Association (NCPA) Annual Convention and Expo,1 Cole’s father Bil Schmidtknect shared his son’s story with a room full of independent pharmacists and pharmacy owners, all of whom have struggled at the hands of pharmacy benefit managers (PBMs).
“We’ve got to put a stop to it, as simple as that,” Schmidtknect said.
Schmidtknect joined Anne Cassity, JD, senior vice president, government affairs, at NCPA; Jack Mozloom, senior vice president, communications, at NCPA, and Carter High, PharmD, RPh, owner of Best Value Pharmacy, in a session about NCPA’s Finish the Fight campaign, launched earlier this year with the goal of getting PBM reform across the finish line.
“Pharmacists are wonderful,” said Cassity. “They’re calling their members of Congress, they’re calling their state legislators. They’re talking to their communities, they’re talking to employers.” But dollar for dollar, “we’re not going to win the fight” against PBMs, she explained. “This isn’t meant to be discouraging… We spend money on lobbying, we do other things. But we’re fighting against 3 Fortune 16 companies and 2 very big trade associations.”
Although those companies have millions of dollars to spend on lobbying, what they don’t have is patients. “There are a lot of patients,” Cassity said. “There are a lot of voters. They’re constituents, and members of Congress listen to constituents.”
The legislation being considered by Congress is more targeted than general PBM reform, Cassity explained. “We have to be very specific when we’re asking for this. If we go up there and say, ‘We want PBM reform,’ and [Congress] passes transparency, that’s not going to do any of us a bit of good.”
For High, getting patients involved in the fight against PBMs was crucial. At his pharmacy in Fort Worth, Texas, he found a simple way to redirect conversations with patients, printing out signs with QR codes imploring his customers to help him fight prescription costs. “Any time a conversation would come up about high drug prices, I’d say, ‘Here, scan this.’”
High hung the sign on the front door of his pharmacy. “I saw patients actually taking the time to scan it,” he said. Eventually, printed smaller versions of the poster and began stapling them to prescription bags. “I would tell my staff to have that conversation.”
NCPA has created a suite of resources that pharmacists can use to get patients involved in the Finish the Fight campaign, digital display ads, print ads, and videos.
READ MORE: PBM Legislation “Highly Likely” to Pass This Year
Finish the Fight focuses on 2 specific piece of PBM reform legislation.
S.2973, the Modernizing and Ensuring PBM Accountability Act/H.R.5378, the Lower Costs, More Transparency Act would require Medicaid managed care programs to reimburse pharmacies based on the national average drug acquisition cost and the state-level Medicaid fee-for-service dispensing fee.
S.3430, the Better Mental Health Care, Lower-Cost Drugs, and Extenders Act includes the No PBMs act, which requires the Centers for Medicare and Medicaid Services to both define and enforce reasonable and relevant Medicare Part D contract terms.
For pharmacists looking to engage patients on social media, “The key…is consistency,” said Mozloom. “Plan on posting on X a couple of times a day, something on Facebook at least 3 or 4 times a day, on Instagram at least once a day.” We noticed advertising, he explained, “not because the messaging is so clever and compelling, [but] because it’s so repetitive. You see it over and over and over again, and that’s what we want to do.”
Finish the Fight isn’t the NCPA’s first advocacy campaign, but it is the organization’s most successful. Previous efforts to get patients involved failed, Mozloom explained, but since its launch, Finish the Fight has resulted in more than 50,000 patients across the country contacting their member of Congress. “We made it very, very simple, and we made it about them. ‘This is costing you money, Congress has to fix it.’”
“Don’t waste your time trying to explain to them how PBMs work,” he added. “Tell them they’re bad; show them these videos. [PBMs] are costing them money.”
Ahead of the upcoming lame duck Congressional session, NCPA will be rolling out a new campaign, 10 to Win. “We need every pharmacy—every independent pharmacy in America—to get just 10 patients to engage,” Cassity explained. The math is simple: 50,000 patients have already contacted their Congressional representatives. If 5000 stores each got 10 new patients to reach out, that would double the number of messages to 100,000. “Think about 19,000 independent pharmacies,” she said. “That’s tens of thousands, hundreds of thousands, five hundred thousand messages. These are all voters, and that’s what legislators listen to and respond to.”
Schmidtknect and his wife, Shannon, hadn’t heard about PBMs until after their son’s death. “The anger I experienced… It was mind blowing,” Schmidtknect said. “My wife and I made one commitment: I was not going to let this happen to somebody else."
“We’re up against Wall Street and the PBMs, with lots of money.” Schmidtknect said. “We’ve got lots of voices. Let’s do it.”
Check out the rest of our NCPA coverage here.
Coverage of the National Community Pharmacists Association 2024 Annual Convention and Expo was supported by Red Sail, with independent editorial content creation on-site by the Drug Topics team.
References
1. High C, Schmidtknect B, Mozloom J, Cassity A. Finish the Fight: strategies for getting PBM reform past the finish line. Presented at: National Community Pharmacists Association 2024 Annual Convention and Expo; October 26-29, 2024; Columbus, OH.
