Voices Across America

Double-Billed and Denied: How Copay Accumulators Are Risking My Life

Nico

State: Texas
Congressional District:

Diseases

Cancer

Issues and Challenges

Nico has encountered: Copay Issues, Copay Accumulator

My Story

I have Chronic Myeloid Leukemia (CML) and have taken Tasigna for many years. The Novartis Universal Co-pay Card has helped every year until this year, 2025. This year, United Healthcare uses an accumulator program, in which they collect the maximum from the co-pay card, in addition to collecting the maximum deductible from the patient.

Texas (the state I live in) Legislature HB 999, passed in 2023, prohibits health plans and pharmacy benefit managers (PBMs) from implementing "copay accumulator" policies, ensuring that patient copay assistance programs are applied towards deductibles and out-of-pocket expenses.

In addition, Novartis' Terms & Conditions specify that the co-pay assistance must be for the benefit of the patient's out-of-pocket obligations, including co-pays, co-insurance, and deductibles.

I don't understand how United is getting away with collecting from both parties, especially in Texas (and other states as well). My medication is on hold until I meet the out-of-pocket max of $6,800. I don't know how I can do this financially at the moment, and I'm going on the second week of not having the medication, which is starting to freak me out.

My Motivation and Inspiration

I don't want others to forgo taking life-saving medicine because they can't afford it, especially when they are getting cheated out of co-pay assistance.