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3 These actions can have grave consequences. Trends in Out-of-Pocket Spending and Regulationįor many rare disease patients, their out-of-pocket costs have grown significantly in recent years, as insurance companies are increasingly shifting the cost of prescription drugs onto patients by raising deductibles, 1 increasing patient cost-sharing, 2 and changing plan design. This includes the deductible, which is the amount of money a patient must pay before insurance will pay a claim, copayments, which is the flat dollar amount that a patient pays in addition to a payment made by their insurer, and coinsurance, where the patient is responsible for a percentage of the cost of a prescription as opposed to a flat rate.

NORD recognizes that the high cost of drugs has a direct impact on patient access and advocates for policies to lower patient out-of-pocket expenses and maximize access to needed therapies.Ī patient’s out-of-pocket costs include their expenses for medical care that are not reimbursed by their insurance. Unfortunately, the cost of these medicines and other treatments that help rare disease patients maintain their overall health can be prohibitive. Innovative new treatments and scientific advancements are enabling many patients with rare diseases to live longer, healthier lives. NORD supports policies that maximize access to the therapies rare disease patients need by lowering out-of-pocket expenses. 5 Myths About Orphan Drugs and the Orphan Drug Act.