Copay / Accumulator Resources

This page includes draft policy information that is still in development. You are welcome to use these materials, but please keep in mind that they may be incomplete or subject to change.

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Copay Accumulators

Copay accumulator is a health insurance policy where a patient’s copay assistance (like manufacturer coupons) does not count toward their deductible or out-of-pocket maximum, meaning patients may face higher costs once the assistance runs out.

Party Pro / Cons and Concerns

Important Note: Remember, there are nuances that differentiate in each state. This material provides general information that can be adapted to truly align to your own state.

Democrat Party Pros
Arguments SupportingCopay Accumulator Policies
Democrat Party Pros
• Seen as a tool to manage rising drug spending and limit manufacturer influence on benefit design. • Supporters argue it may encourage insurers to steer patients toward lower-cost therapies when clinically appropriate.
Democrat Party Cons/Concerns
Arguments Opposing Accumulators for Rare Disease Patients
Democrat Party Cons/Concerns
• Creates major financial barriers for rare disease patients who depend on extremely high-cost, non-substitutable treatments. • Once assistance runs out, patients face unaffordable deductibles and out-of-pocket costs, risking treatment interruption. • Strong concerns about equity, affordability, and patient harm.
Republican Party Pros
Arguments Supporting Copay Accumulator Policies
Republican Party Pros
• Viewed as a mechanism to keep premiums down and maintain market stability. • Supports insurer flexibility and opposes mandates that restrict plan design. • Some argue that relying on coupons can distort true market pricing.
Republican Party Cons/Concerns
Arguments Opposing Accumulators for Rare Disease Patients
Republican Party Cons/Concerns
• Families with rare diseases face significant financial strain, even when they have insurance. • Copay accumulators can be seen as interfering with patient access to essential, often lifesaving therapies with no alternatives. • Constituent concerns often drive support for targeted protections without broad new mandates.
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Copay Shock
From the Patient Perspective

Copay accumulators are deeply harmful because they prevent manufacturer assistance from counting toward a family’s deductible, leaving patients with rare diseases suddenly facing massive out-of-pocket costs once the assistance runs out. Many rely on expensive, non-substitutable medications, so treatment delays or interruptions can be dangerous. Patients also feel blindsided by unclear insurance rules and worry about financial instability, skipped doses, or being forced to choose between essential care and basic household expenses.

Talking Points
  • Ensure copay assistance counts toward deductibles and out-of-pocket maximums.
  • Prohibit accumulators for single-source rare disease medications.
  • Require transparency about accumulator use in all insurance plans.
  • Protect families from sudden, unaffordable midyear cost spikes.
  • Ensure evolving federal reforms do not weaken patient cost protections.
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Policy Guidelines
  1. Prohibit copay accumulator programs for drugs with no generic or therapeutic alternative.
    Most rare disease patients rely on a single FDA-approved treatment. Policies should ensure that copay assistance counts toward deductibles and out-of-pocket limits for these essential therapies.
  2. Protect patients from sudden, unaffordable out-of-pocket costs.
    Under proposed federal changes that could allow broader use of accumulators, families could face thousands of dollars in surprise expenses once copay assistance runs out. Policies must prevent this cost-shifting.
  3. Require transparency in how plans apply accumulator programs.
    Many patients don’t know an accumulator is in place until they’re denied at the pharmacy. Policies should require clear, upfront disclosure in plain language during enrollment and at the point of sale.
  4. Ensure accumulators cannot be applied to drugs used to treat chronic or life-threatening rare diseases.
    Given ongoing proposals that may loosen patient protections, states should enforce guardrails to prevent financial barriers to medically necessary treatments.
  5. Protect low-income families who rely on copay assistance.
    Proposed federal changes may increase patient cost-sharing; state-level protections can ensure that copay assistance works as intended for those least able to absorb high costs.
  6. Prevent insurers from shifting excessive costs onto patients during transition periods.
    If federal reforms alter marketplace rules, patients with rare diseases must remain shielded from midyear deductible resets or sudden policy changes that affect medication affordability.
  7. Require that any savings from accumulator use be reinvested in patient affordability.
    Without safeguards, proposed reforms could allow plans to retain savings without improving patient access. Policies should ensure benefits flow to patients—not just insurers.
  8. Promote coverage of manufacturer assistance programs without penalty.
    Rare disease families depend on these programs to maintain treatment; policies should prevent insurers from undermining them through accumulators or maximizers.
  9. Align copay policies with access to high-cost therapies, including gene therapy.
    As current proposals explore restructuring drug pricing and cost-sharing, policies must ensure that cost protections extend to advanced therapies that often rely on initial assistance support.
  10. Center patient input when evaluating cost-sharing reforms.
    Any proposed federal or state change to cost-sharing rules—including those in large health reform bills—must consider the lived impact on rare disease families who cannot substitute or delay treatment.
Additional Resources

Organizations and leaders who have policy experience in this area

All Copay Counts Coalition

1-Pagers
Videos & Podcasts