Warns That State Drug Price Caps Fail to Lower Costs for Patients and Threaten Access for Those with Rare Diseases

“Follow the UPL” Traces the Full Pharmaceutical Supply Chain to Show Why Upper Payment Limits Leave Patients Behind.

Read the full study: https://www.rareaccessactionproject.org/state-policies/pdab/follow-the-upper-payment-limit/

WASHINGTON, July 28, 2026 /PRNewswire/ — The Rare Access Action Project (RAAP) today announced the release of a new policy study, “Follow the UPL,” examining why upper payment limits (UPLs) — the reimbursement caps being set by state Prescription Drug Affordability Boards (PDABs) — are not reducing costs for patients at the pharmacy counter, and why the patients most at risk are those with rare diseases. The full study is available at:

https://www.rareaccessactionproject.org/state-policies/pdab/follow-the-upper-payment-limit/

As states continue to look for ways to address prescription drug costs, nine have established active PDABs, with Colorado and Maryland becoming the first to set UPLs — on the arthritis biologic Enbrel and the diabetes drug Jardiance, respectively. The study, researched and written by Jennifer Snow of Apteka Policy, traces the full pharmaceutical supply chain to explain why, despite years of state effort and significant public resources, not a single patient has seen a lower out of pocket costs due to a PDAB-set UPL.

A UPL sets a ceiling on what payers can reimburse a pharmacy or provider for dispensing a specific drug. It does not cap the price of a product, and it does not guarantee that savings reach patients. As the study documents, the potential for disruption of patient access will occur at the patient access point, with pharmacies and providers potentially operating at loss. Patients bear the risks of supply chain disruption without any financial benefit.

“States are right to focus on affordability, but policy solutions must work within the realities of how the supply chain actually operates,” said Michael Eging, Executive Director of RAAP. “Our analysis shows that UPLs as currently designed do not lower what patients pay, and for those with rare diseases who already face limited options, these policies carry real risks of cutting off access to therapies with no alternative. Affordability reforms should lower patient costs without destabilizing the supply chain that patients depend on.”

RAAP’s new study highlights several key findings:

• Years of effort, no patient savings: As of mid-2026, no patient has paid less at the pharmacy counter because of a PDAB-set UPL. The analysis traces three detailed supply chain scenarios to show why: a UPL caps reimbursement at the payer level, not cost sharing at the patient level.
• Supply chain consequences: When a UPL creates economics that don’t justify the operational complexity of state-specific chargebacks, supply chain participants may decline to stock the drug in that state. Pharmacies operating on margins already compressed by PBM reimbursement face further pressure, and providers administering drugs under a buy-and-bill model may face unrecoverable losses on every dose.
• Federal policy conflicts: If a state UPL falls below a drug’s Medicaid Best Price, that UPL resets the rebate floor for every state’s Medicaid program nationwide. A pricing decision made in one state can increase Medicaid liability for manufacturers across all fifty states.
• Disproportionate impact on rare disease patients: Patients with common conditions may have alternatives if a supply chain disruption occurs. Rare disease patients often do not. If a UPL causes a wholesaler to stop distributing a therapy or a manufacturer to exit a state market, a patient may lose access to the only treatment available for their condition — anywhere.
• The single-indication trap: Exemptions designed to protect rare disease drugs under both the federal Inflation Reduction Act and state PDAB frameworks strip away protection the moment a manufacturer seeks FDA approval for a second rare disease indication — even if that second indication is also for a rare disease. This creates a direct financial disincentive to expand access to additional rare disease populations.

The study’s author, Jennifer Snow, stated: “When you follow the dollar through every layer of the supply chain, the picture becomes clear: a UPL is a reimbursement ceiling, not a patient savings guarantee. The structural dynamics of how wholesalers, pharmacies, PBMs, and health plans interact mean that savings generated by a UPL do not automatically reach the people who need them most. States that want to lower what patients pay have better tools available — tools that direct savings all the way to the pharmacy counter.”

Rather than pursuing UPL policies that risk supply chain disruption without delivering patient savings, the study recommends that states consider affordability strategies that work directly with supply chain economics: risk pooling and reinsurance programs that spread the cost of high-cost specialty therapies across a broader enrollment base, capped copay programs that set a direct ceiling on patient out-of-pocket costs, and restrictions on copay accumulator and maximizer programs that restore the intended value of manufacturer patient assistance. Each approach is designed to ensure savings follow the dollar all the way to the patient.

“Policy success should ultimately be measured by whether patients can reliably access the treatments they need,” Eging added. “Right now, the dollar stops at the health plan. States have an opportunity to pursue affordability solutions that strengthen, not disrupt, the systems patients depend on.”

RAAP, the Rare Access Action Project, is a coalition of patient and life sciences stakeholders that explore creative policy solutions to address structural issues in access and coverage. Our priority is to help ensure rare disease patients have access to the care and treatments they need.

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SOURCE Rare Access Action Project (RAAP)