AHDA Joins National Coalition Calling for Stronger Copay Protections
The Alliance for Headache Disorders Advocacy recently joined 54 other patient and provider organizations in a letter to the U.S. Department of Health and Human Services and the Centers for Medicare & Medicaid Services. Submitted by the All Copays Count Coalition, the letter responds to a federal review of Essential Health Benefits and calls for action on two insurance practices that can leave patients facing unexpectedly high medication costs: copay accumulator programs and copay maximizers.
These policies are complicated by design, but their impact on patients is straightforward. Financial assistance may help someone access a medication, yet the health plan can still require that person to meet the full deductible or out-of-pocket maximum as though the assistance had never been provided, allowing the insurer to double-dip.
For people who depend on costly preventive, acute, or specialty treatments, that can mean delayed care, skipped doses, or stopping treatment altogether.
What is a copay accumulator?
Manufacturer and foundation copay assistance is often used by patients who cannot afford the cost-sharing or copays required for a prescribed medication. Traditionally, the amount paid through that assistance could count toward the patient’s deductible and annual out-of-pocket limit.
Under a copay accumulator program, the insurer or pharmacy benefit manager accepts the assistance but does not count it toward those totals.
Once the assistance runs out, the patient may suddenly be responsible for the full cost of the medication until the deductible or other cost-sharing requirement is met. The coalition letter explains that these costs can be prohibitive for people with serious and chronic illnesses and can cause patients to skip doses or discontinue treatment.
The federal policy surrounding copay accumulators has shifted over several years. A federal court ruled in 2023 that insurers could not use these programs for medications without generic equivalents, but federal enforcement has remained unclear. Although 26 states have passed laws limiting or prohibiting copay accumulators, those state protections do not reach every health plan.
AHDA joined the coalition in asking federal officials to issue clear rules stating that copayments made by or on behalf of a patient must count toward the patient’s annual cost-sharing obligations.
What is a copay maximizer?
Copay maximizers use a different approach but can create many of the same barriers.
Under these programs, a health plan may classify certain covered medications as “non-essential health benefits.” That label does not mean the medication is medically unnecessary. Instead, it can allow the plan to set patient costs above the normal federal limits on out-of-pocket spending.
Patients may then be required to enroll in a program that captures the full value of available copay assistance. A patient who does not participate may be required to pay most or all of the medication’s cost. The result is often a confusing process filled with additional paperwork, delays, and uncertainty about whether treatment will remain affordable.
Federal rules already prohibit this practice in individual and small-group health plans. However, those protections do not currently apply to many large-group and self-funded plans. Federal agencies previously announced plans to address that gap, but the promised rulemaking has not yet been completed.
The coalition is asking HHS, CMS, the Department of Labor, and the Department of the Treasury to finish that work and enforce protections across health plans.
Why this matters to people with headache disorders
People living with migraine, cluster headache, new daily persistent headache, and other headache disorders often spend years trying to find a treatment plan that works. Even after a clinician identifies an effective medication, insurance barriers can make it difficult to start or continue that treatment.
Copay accumulator and maximizer programs add another layer of uncertainty. A medication may appear affordable at the beginning of the year, only for the patient to face a sudden and unaffordable bill later. Someone may have insurance, use the assistance available to them, and still be told that they have made no progress toward their deductible.
That is not meaningful coverage.
These practices can also interrupt treatment that is already working. For someone managing a disabling and unpredictable neurological disease, losing access to an effective medication can affect their ability to work, attend school, care for family members, and participate in daily life.
What AHDA is asking federal officials to do
By signing this letter, AHDA joined organizations representing people with cancer, HIV/AIDS, bleeding disorders, arthritis, epilepsy, autoimmune diseases, and many other serious and chronic conditions. Together, we are asking federal agencies to:
- require copay assistance to count toward a patient’s deductible and out-of-pocket maximum;
- prohibit copay maximizer programs across all non-grandfathered health plans;
- enforce existing patient protections; and
- complete the federal rulemaking that patients and advocacy organizations have been waiting for.
The coalition’s message is simple: health plans should not be able to accept financial assistance intended for a patient while denying that patient credit for the payment.
People living with migraine and other headache disorders already face significant barriers to diagnosis, treatment, and consistent care. Insurance practices should not create another obstacle between a patient and a medication their clinician has prescribed.