Maryland's Prescription Drug Affordability Board is in the middle of deciding whether two widely used biologic medicines, one for atopic dermatitis, asthma, and other type 2 inflammatory conditions and one for psoriasis, psoriatic arthritis, Crohn's disease, and ulcerative colitis, are "unaffordable" for the state. The answer the Board reaches will shape whether Maryland becomes one of the first states to set a ceiling on what can be paid for a medicine. On September 15th, Patients Rising filed formal comments on both cost reviews. You can read the full letters below. This post explains what we asked for and why.
Maryland law gives the Board a specific job during a cost review: to decide whether a drug "has led or will lead to affordability challenges for the State health care system or high out-of-pocket costs for patients." Those are two different questions, and the distinction matters more than it might seem.
A medicine can be a large line item in the state employee health plan's budget while the individual patient's bill is determined almost entirely by something else: which tier the plan put the drug on, whether the patient pays a flat copay or a percentage of the price, how large the deductible is, and whether the manufacturer's copay assistance counts toward it. The first question is about the plan's ledger. The second is about a person standing at a pharmacy counter in January. Our first ask to the Board was simply to keep those two questions separate, answer each one honestly, and show where any high patient cost actually comes from. If the problem is a coinsurance structure, the fix is not the same as the fix for a list price.
Anyone who has followed our work on drug pricing knows the phrase we keep coming back to: a price is not a cost. Nearly every pricing reform, from Medicare negotiation to state affordability boards, changes a number that patients don't pay directly. Savings only reach a patient if there is a mechanism that carries them to the counter, and that mechanism lives in benefit design, not in the price.
This is the core of what we told the Board. An upper payment limit, the tool Maryland's board can eventually use, controls the amount a purchaser pays for a drug. It does not, and cannot, set the tier a plan places a drug on, the coinsurance percentage a plan charges, the size of a deductible, or the prior authorization and step therapy a plan imposes. Those are the levers that decide what a patient pays and whether that patient stays on a therapy that is working. So we asked the Board to do something no state board has yet done well: model, plan type by plan type, what patients would actually pay under any policy it might adopt, and say plainly which patients such a policy could reach and which it could not.
Because we do not put real patients' names and private details into a public comment or blog, the scenarios in our letters are illustrative composites, drawn from patients living with these specific autoimmune diseases and taking these medications along with the caregivers who support them. They are worth sharing here because they show where affordability actually breaks down for patients.
There is the young adult with severe eczema who finally sleeps through the night on a biologic, and whose problem is not the drug's price but the first quarter of every year: a high deductible, 30 percent coinsurance on the specialty tier, and an accumulator program that keeps manufacturer assistance from counting toward that deductible. Lower the list price and the deductible is still the deductible, the coinsurance is still 30 percent, and January looks the same.
There is the school bus driver with uncontrolled asthma who has been to the emergency department three times in a year, whose plan makes her fail a different biologic first, and who has another exacerbation and misses two weeks of work while the paperwork clears. Her affordability story was never about the price of the medicine. It was about the cost of the delay and the emergency care the system paid for while she waited.
There is the nurse with Crohn's disease whose induction doses are infused at a hospital outpatient center under her plan's medical benefit, at a facility fee plus 20 percent coinsurance, and whose maintenance doses a few months later are self-injected under the pharmacy benefit at a copay that assistance covers almost entirely. Same molecule, same patient, two completely different bills, and neither one determined by the drug's price.
And there is the electrician with psoriatic arthritis whose joints worsen for five months while he is stepped through an older therapy, who stabilizes on the one his rheumatologist wanted, and who is then asked to switch at plan renewal for reasons that have nothing to do with his health. His costs were lost wages and the risk of losing a therapy that worked, and every one of them was governed by utilization management decisions a payment limit cannot touch.
Our letters close with seven specific requests, and the first is the one we care about most. The Board has not yet published the dossiers, the evidence files that will drive its decision, so today's comments could only address how the study should be designed rather than what it found. We asked the Board to publish each dossier and provide a defined public comment window on it before making any preliminary determination. Maryland's regulations guarantee comment on the draft report that comes after a determination, but not on the evidence that leads to it. Patients deserve to see and respond to that evidence first.
We also asked the Board to report patient out-of-pocket costs broken down by plan type, benefit, tier, and cost-sharing structure rather than as a single average; to look at net prices and rebates alongside list prices and say where those rebates go; to count the costs a therapy displaces, like hospitalizations and lost work, and the costs that delays impose; to evaluate "cheaper alternatives" at the level of the individual patient's treatment history, since a therapy a patient has already failed is not an alternative for that patient; to assess whether a payment limit could affect the willingness of pharmacies and infusion centers in Maryland to stock and administer these medicines; and to keep inviting patients and clinicians to testify, ideally with a plain-language summary of each dossier so the people whose costs are at issue can follow along.
The Board meets two more times this year, on September 28th and again on November 16th. The dossiers for both drugs could surface at either meeting, and a preliminary determination would follow. We will be watching, and we will be back with a second comment when the evidence is public. If you are a Maryland patient living with one of these conditions contact us and share you story, we will make sure you know when your voice can make a difference.
Read the letters:
Patients Rising Comments on the Maryland PDAB Cost Review of Dupixent
Patients Rising Comments on the Maryland PDAB Cost Review of Skyrizi