Patient Financial Assistance

Hemophilia Toolkit

Benefit Plan Design: Patient Financial Assistance

For certain chronic conditions such as hemophilia, high-cost/high-value treatments are currently without generic therapeutic alternatives. Members often rely on financial help to access life-saving treatments. Non-adherence is a concern, that for many, is directly related to the level of coinsurance or cost-share involved. For bleeding disorders specifically, cases have been documented where members are seeking treatment via the emergency room or other high-cost infusion providers when they can’t afford to pay for their medications. This ultimately drives higher costs for payers and members. Considering that one severe bleeding episode can lead to permanent debilitating joint damage or even death if a major organ or head bleed is involved, employers should ensure members have access to advocacy programs that provide education and support about hemophilia and management of finances.

Due to the rise in health care costs, some employers have implemented cost shifting strategies, such as high-deductible health plans, coinsurance, copays and/or high-tiered placement for specialty drugs. This cost shifting can be especially concerning for members with hemophilia. Patients with hemophilia should be provided proper education when selecting a health plan that is right for them. For specialty medications such as clotting factor and substitution therapy, significant costs can result from even one month of treatment. The deductible may be met almost immediately in the coverage year which means members with hemophilia are responsible for substantial costs in a short time frame, as opposed to accruing more moderate costs over the course of the year.

Specialty Copay Card Programs

While copay cards have some positive benefits for members such as improving access, affordability and compliance, they can also increase costs by encouraging unnecessary use of higher-priced, branded drugs and some employers believe they circumvent the formulary. But for people with rare diseases like hemophilia, manufacturer copay cards are a mechanism to mitigate the cost burdens that come with ongoing treatment.

In 2017, some PBMs began to introduce two new programs to manage copay card use – accumulator adjustor and copay allowance maximization. Neither program typically allows a member’s copay assistance to count towards their deductibles or annual out-of-pocket maximum. When applied to high-cost/high-value medications, such as hemophilia therapies, these programs can create a barrier to members’ utilization of necessary and potentially life-saving therapies. In addition, they can reintroduce financial barriers to patient access and negate the benefits of copay assistance programs for those with a chronic/rare disease with no generic alternative.

Employers should carefully consider whether these programs should be applied to life-threatening conditions with no alternative treatments. Employers who implement these programs as a one-size-fits-all option can expose themselves and members to a series of costly unintended consequences. For example, if a member cannot afford their out-of-pocket expenses, they are left with no option but to be non-adherent to their prescribed treatment to prevent bleeds, forcing them to be reactive and seek treatment in the highest cost of care setting, the emergency room.

Benefit Plan Design: Recommended Actions

(click here for a PDF of this information)

📌 1. Protect Access to Life Saving Therapies

  • Exempt hemophilia therapies from accumulator and copay maximizer programs.
  • Ensure manufacturer copay assistance can be used to offset member cost share.
  • Maintain coverage for factor replacement therapy without punitive specialty tiering.

    Impact: Prevents non adherence, ER visits, and catastrophic claims.

📌 2. Reduce Financial Barriers for Members

  • Cap out of pocket costs for hemophilia therapies.
  • Offer predictable cost share models (e.g., fixed copays instead of coinsurance).
  • Provide plan selection counseling for members with bleeding disorders during open enrollment.

    Impact: Improves adherence and reduces avoidable medical spend.

📌 3. Strengthen Care Navigation and Advocacy Support

  • Ensure members have access to hemophilia advocacy programs that provide:
    • Financial counseling
    • Treatment education
    • Navigation of assistance programs
    • Support for managing chronic therapy costs
  • Partner with Hemophilia Treatment Centers (HTCs) for comprehensive care planning.

    Impact: Reduces financial toxicity and improves clinical outcomes.

📌 4. Align Benefit Design with Clinical Reality

  • Recognize that hemophilia therapies can meet the deductible in a single fill; design benefits accordingly.
  • Avoid one size fits all cost shifting strategies that disproportionately harm rare disease members.
  • Treat hemophilia as a protected condition requiring tailored benefit design.

    Impact: Prevents unintended consequences and protects both members and employer budgets.

📌 5. Monitor and Manage Site of Care Costs

  • Direct members to HTCs or qualified specialty pharmacies with expertise in bleeding disorders.
  • Avoid unnecessary use of high cost hospital infusion centers triggered by affordability barriers.
  • Require specialty pharmacies to follow MASAC standards (no auto shipping, inventory checks, monthly contact).

    Impact: Reduces waste, improves adherence, and lowers total cost of care.

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