Why we need greater transparency in prescription drug pricing

If you’re in the U.S., here is a small experiment you can run right now: Google the price of any prescription drug. Whatever number comes back is the list price, and it’s worth knowing that almost no one actually pays that amount. Think of it like the sticker price on a car: a starting point, not the end number. The difference with medicine is that the real number is much harder to find.

I ran into this myself recently, and what I learned surprised me. I’ve been navigating a lot of healthcare expenses this year — a hip replacement and cervical spine surgery among them — so I’ve been reading my statements closely.

I received an explanation of my benefits from Aetna for my Fasenra (benralizumab) prescription. It listed the amount the company “paid” as $6,022 per dose. That number stopped me, because I was fairly sure it wasn’t what Aetna had actually paid. It was the list price, and insurers rarely pay the list price.

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So I did some looking. Drug pricing has several layers, and most of them aren’t visible to the person receiving the bill. The list price is the published, prediscount figure. What an insurer reports “paying” often reflects that same number, because it leaves out the discounts and rebates negotiated privately between the drugmaker and the insurer’s pharmacy benefit manager. Those rebates are real and expected. They are a portion of the cost that is refunded months after the medication is dispensed. But they don’t appear on any statement you receive.

The closest I came to a clear figure was through Medicare. For drugs like mine, Medicare publishes a public benchmark price that, unlike the list price, is calculated after discounts and rebates. For my medication, that benchmark sits more than $1,000 below the $6,022, and it isn’t the true floor, because it still doesn’t capture the private rebates negotiated on the commercial side.

The final actual cost? As a patient, you generally can’t find it. Those net prices are treated as confidential business information. It’s a strange thing to sit with: the true price of my own medicine exists as a number that, by law, is not required to be shared.

This is why I care so much about transparency in healthcare — across the whole system.

You can see the same pattern in a hospital bill: the amount billed, and the lower amount the hospital actually accepts from insurance, which are often very different numbers on the same page.

A financial burden

These details matter, especially to those of us living with ANCA vasculitis. For many of us, this isn’t about an occasional copay; they are substantial ongoing costs that add real weight to an already demanding life. The research bears this out. One analysis of ANCA-associated vasculitis in the U.S. found that a single relapse of granulomatosis with polyangiitis can drive costs three to four times higher, and a microscopic polyangiitis diagnosis can roughly double the cost of care.

And the impact isn’t only seen in money going out; it’s seen in money that stops coming in. A survey of people with systemic vasculitis found that about a quarter of them became permanently work-disabled or retired early because of their disease, with incomes reduced by nearly half. I’m on disability myself, and it is a real challenge.

I understand this is a complicated system, with contracts, negotiations, and many parties involved. But complexity isn’t the same as necessity, and it doesn’t explain why the people paying the bills are so often the least informed.

So my hope is a simple one: more transparency. Clear information about what treatments cost, what is actually paid, what is refunded, and to whom. When we can see the real numbers, we can make better decisions. A system that’s easier to understand is one that serves patients better.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.