Too often, patients in the chronic and rare disease community know how it feels to find out the price for the drug they need is out of reach. And that’s if it's even covered by their health plan at all.
If you’ve been following our newsletter or podcast, you know drug pricing is something we talk about frequently. And for good reason. Drug pricing is confusing and complex, often leaving patients in the dark. That’s where we come in. Today’s newsletter dives into this topic with a hyperfocus on one player in the drug pricing ecosystem: pharmacy benefit managers, or PBMs.
PBMs can inflate costs for patients by using rebates and clawbacks to take a percentage of the profits earned from the sale of the prescription. Take insulin, for example. From 2014 to 2018, PBM earnings from insulin increased by 150%. But greater transparency into this system can lower prices and improve access for patients. Read on for more stories, expert insights, and resources on this topic.
Making Opioid Reversal Medications Available to Those at Risk for Overdose
We recently talked about the standing orders and third-party prescriptions. These make naloxone, a medicine used to counteract the effect of opioid overdose, available at pharmacy counters without a patient-specific prescription. The instances of opioid overdose have made naloxone access and education programs incredibly valuable.
Patients Rising has built a project, the goal of which is to measure public understanding of standing orders. To do this, we have developed an 8-question survey-tool. We will distribute this to various populations known to live with chronic pain or to utilize opioids in pain management.
On the upcoming Patients Rising Podcast episode, we talk with Antonio Ciaccia, drug pricing researcher and PBM expert. Antonio explains the key players of the drug pricing supply chain with a focus on the middlemen, otherwise known as pharmacy benefit managers. Here’s a preview of our conversation with Antonio, who explains how the role of PBMs has skewed over time. In fact, many pharmacies are able to lower costs for patients by bypassing the PBM altogether.
Antonio Ciaccia: One of the things that I've been frustrated by when I look at the system is that we see numerous instances where pharmacies that pull out of the insurance system are able to provide significantly more savings to patients and plan sponsors than pharmacies that are currently operating in our insurance and PBM-centric model.
And so that's absurd, right? The entire existence of PBMs is supposed to be, their entire selling point, is that they're here to lower the cost of medicines. But routinely, we see that those who work around PBMs are able to find bigger savings, which is crazy because PBMs are Fortune 15 companies.
They're some of the largest companies in the world. They should have the most leverage of anyone in the marketplace to get lower costs. But we routinely see instances where the small, where very small mom-and-pop pharmacies are able to offer lower prices than what PBMs are offering to their clients.
In case you missed it, we compiled a list of patient stories about the impact PBMs have had on their care. You can find them all in this patient impact report. Here’s Beth’s story on how her PBM forced her to switch from a medication she was stable on to another drug that would cost her more money.
“I received a letter in the mail from my insurance pharmacy benefits manager (PBM) that the medication I had been taking for the past eight years would no longer be covered. It said I should ask my doctor about writing a new prescription for a different listed medication. That was it. The letter provided no phone number to call if I had questions. It did not mention an appeals process.
After contacting my PBM, I learned I could ask my doctor to file an exemption request. However, my PBM’s approval criteria required I first take and fail the new medication or have other clinical indication, which was not defined. If the exemption was approved it would be at a higher copay tier, making it subject to coinsurance and deductible.
In practical terms, only after a documented adverse event on the new medication could I go back to the medication I had been stable on for eight years and my costs would rise by $2,400 a year.”
Patients like Beth deserve a system that is transparent and prioritizes care, not the profits of middlemen. If you have a similar story, we want to hear about it. Send us a DM on social media to share your experience.
Keep an eye on your inbox for this newsletter next week.
Sincerely,
Terry Wilcox
CEO & Founder Patients Rising
Patients Rising, 700 12th Street NW Suite 700, Washington, District Of Columbia 20005, United States, 202-751-1186
