Prescription Drug Out-of-Pocket Costs

NORD supports policies that reduce patient out-of-pocket expenses on prescription drugs to enable better access to the therapies rare disease patients need.

Innovative treatments are allowing many rare disease patients to live longer, healthier lives. Unfortunately, the cost of these medications can be excessively high, placing them out of reach for many individuals who need care. NORD recognizes that high drug costs directly limit patient access and advocates for policies that reduce patient out-of-pocket expenses.

What are out-of-pocket costs?
Out-of-pocket costs are expenses patients pay for medical care that insurance does not cover, including:

• Deductibles: The amount a patient must pay before insurance covers a prescription or service
• Copayments: A flat dollar amount paid for a prescription or service
• Coinsurance: A percentage of the cost the patient pays rather than a flat rate

Why it matters
For many rare disease patients, out-of-pocket costs have grown significantly as employers and insurers shift more health care costs onto patients through higher premiums, increased deductibles, and changes in plan design. According to a May 2025 Kaiser Family Foundation (KFF) poll, one-third of the public (33%) reported taking cost-saving measures with their prescription medications in the past 12 months. These measures include taking an over-the-counter drug instead of filling a prescription, not filling a prescription due to cost, and cutting pills in half or skipping doses.¹

What we’re measuring
This measure evaluates whether states have enacted policies to limit patient out-of-pocket costs for prescription drugs across five key protections:

• Deductible protections: Policies that prohibit or limit deductibles for prescription drug costs
• Drug cost caps: Monthly caps on what a patient pays per drug or requirements for fixed copayments
• Standardized benefit plan design: Requirements that plans offer standardized options to make plan comparisons easier
• Annual drug cost limits: Limits on the total amount a patient pays for prescription drugs each year
• Copay accumulator bans: Policies ensuring all payments count toward a patient’s deductible, regardless of the payment source

How we grade
Each of the five protections is weighted equally. States receive higher grades based on how many of these protections they have enacted. States with at least three protections receive the highest grade, while states with none receive the lowest grade.