Patient Financial Assistance

Hemophilia and Bleeding Disorders 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 due to the cost of a single order 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 as is typical for non-hemophilia members.

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.

Regulatory Activity

With the 2021 Health and Human Services (HHS) Notice of Benefit and Payment Parameters (NBPP) rule, plans and issuers (employers) may exclude the value of pharmaceutical manufacturers’ coupons from the annual limitation on cost sharing, including in circumstances in which there is no medically appropriate generic equivalent available.

This policy does not supersede state law--if state law requires plans to apply patient assistance to deductibles and the annual limitation on cost sharing, this does not change those requirements. Several states have passed legislation to restrict or ban the use of copay accumulator programs.