Insurance Guidance

Co-Pay Accumulators

Many of us receiving Gaucher treatments rely on financial assistance from pharmaceutical manufacturers and other third parties to meet our high insurance co-pays and deductibles due to the high costs of our treatments. The value of this financial assistance typically counts toward the health plan’s deductible or maximum out-of-pocket limit. These financial assistance programs offer tremendous relief for the Gaucher community and other rare disease communities by helping with some of the financial burden of our disease.

Copay Accumulator Programs

The GCA has recently learned of Copay accumulator programs that exclude the value of financial assistance from third parties from counting toward the health plan’s deductible or maximum out-of-pocket limit. What this means is that assistance from a pharmaceutical company will not count toward a patient’s out-of-pocket costs, which can make receiving treatment less affordable. These accumulator programs may force patients to switch or stop taking their treatment because they cannot afford their out-of-pocket costs once their financial assistance has been exhausted. Copay accumulator programs disproportionately affect Gaucher patients and others whose conditions are managed or treated by drugs in specialty formulary tiers that require greater cost-sharing by the patient.

Changes to United Healthcare Insurance Policies

United Healthcare Insurance (UHC) is enacting copay accumulators effective January 1, 2021, and the GCA is aware of other insurers who may follow suit. Five states have already taken action to prohibit these insurance companies from copay accumulator programs: Georgia, West Virginia, Virginia, Arizona and Illinois. The GCA is working toward ending these copay accumulator programs and has signed on to a group letter requesting UHC to end this program. The letter can be viewed here.

What can you do?

While GCA is working with other advocacy organizations to end this plan, we encourage you to advocate on a local level. Use your voice! If you or your family may be affected by copay accumulators, please send a letter to your local congressperson to take action. A sample letter can be found here. How to find your local state legislative officials can be found here.

Life Insurance

Obtaining life insurance with type 1 Gaucher disease is possible but often a struggle, and information found online is outdated and difficult to understand. As we know best, living with type 1 Gaucher non-neuropathic disease and receiving treatment does not shorten our lifespan. However, obtaining life insurance can still be a struggle despite the importance of having it to protect our families and loved ones. The GCA has worked with Underwriters Brokerage Service (UBS) to enable patients to apply for and obtain life insurance despite a diagnosis of type 1 Gaucher disease. To start the process, download and complete the forms and send them to Bob Katzen at or Fax # (412)-261-0740.

GCA has no connection or affiliation to UBS and does not guarantee the successful application for life insurance. GCA is not a licensed insurance broker and offers this information to the community solely as a convenience. All questions and comments regarding the application for life insurance should be directed to Bob Katzen at 412-586-5045 or