Gone from the shelf: The hidden danger of drug price caps

I remember what my life looked like before I found the right medication. Crohn’s disease had stolen years from me, piece by piece. I spent more time managing my disease than with my family. I couldn’t trust my body to get me through a workday.

After years of suffering, failed treatments, unwanted medication side effects and insurance denials, I worked with my doctor to find a treatment that was right for me. Within months, I was in remission. For the first time in years, I felt like myself again.

This is what it means for a patient to finally find something that works, and what it would mean to lose access to it through no fault of their own.

That is exactly what Maryland patients may be facing.

The Maryland Prescription Drug Affordability Board is reviewing the costs of several medications, potentially setting upper payment limits, a cap on what the state will pay for these medicines. While the limits would currently apply only to drugs purchased by the state’s health plan, the General Assembly has already passed legislation expanding the board’s authority to the marketplace as a whole, impacting every Marylander.

I don’t believe the board’s intentions are malicious. But there is a critical flaw in the upper payment limit approach that is getting far too little attention: price caps do not help patients who can no longer get the drug at all. A medication that sits behind an empty pharmacy shelf is not affordable. It is simply gone.

Here is the economic reality that everyone tends to ignore. Specialty biologic drugs, the kind used to treat conditions like my disease are expensive for pharmacies to stock. They must be acquired upfront, often at significant cost, long before any reimbursement arrives.

When a price cap sets reimbursement below what it costs a pharmacy to carry a drug, the pharmacy faces an impossible choice: Absorb the loss or stop stocking it. For independent and community pharmacies already running on thin margins, absorbing that loss is often not an option.

The National Alliance of State Pharmacy Associations has warned directly that reduced reimbursement under upper payment limits may force pharmacies to limit their stock of specialty drugs, resulting in delayed treatment and reduced access to necessary medications.

This is not a fringe concern. It is the predictable result of setting a payment ceiling without ensuring the supply chain can function beneath it. Even the CEO of the Diabetes Patient Advocacy Coalition raised the alarm at a Maryland PDAB meeting, warning that upper payment limits will not actually lower costs at the pharmacy counter.

Skyrizi, a biologic used to treat several medical conditions as well as the disease that I have, is currently under PDAB review, and is a prime example of what is at stake. For patients who have spent years cycling through treatments that did not work, drugs like Skyrizi are not a luxury. They are the medication that finally worked after everything else failed.

Maryland patients with autoimmune conditions describe biologics like this as life-changing, not in the vague marketing sense, but in the literal sense: They are back at work, back with their families, back feeling like themselves. Forcing those patients to switch medications is not a bureaucratic inconvenience. It is a medical crisis. Switching biologics can take months, trigger serious side effects and fail entirely.

There is a deep irony in all of this. The PDAB exists, in part, to improve access to medications for people who cannot afford them. But a price cap that pushes pharmacies to stop stocking a drug does not improve access. It destroys it. A patient whose insurance covers a drug, or who can afford it out of pocket, would find themselves unable to fill their prescription simply because no pharmacy nearby is willing to carry it.

I understand that drug prices can be high for life-saving and life-altering medication, but the solution cannot be a policy that trades one form of unaffordability for another.

If the PDAB truly wants to help patients like me, it should pursue policies that lower costs at the pharmacy counter without dismantling the supply chain that gets the drugs there. It should demand transparency from pharmacy benefit managers, who collect enormous rebates from drug manufacturers that never make it to patients. I have no doubt that these are even harder problems to solve, but they are the right ones.

The board has no guarantee that patients who need it will still be able to get it. “Trust us.” is not a guarantee. The board has said it will monitor access after the fact, through quarterly reports on problems that emerge. But monitoring a crisis after it has harmed patients is not patient protection. It is failure.

Trust us.