Voices Across America

X-Linked Hypophosphatemia and Copay Accumulators

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State: Alabama
Congressional District: AL02


Bone / Muscle Disease, Kidney Disease

Issues and Challenges

Shannon has encountered: Copay Issues, Copay Accumulator

My Story

My name is Shannon Sharp. I am a third generation rare disease patient affected by the debilitating disease, X-Linked Hypophosphatemia or XLH. XLH causes patients to waste phosphate which leads to poor bone mineralization. Children with XLH develop bowed legs or knocked knees due to their weak bones. XLH is not a curable disease but in 2019 the first effective treatment was approved by the FDA. This new treatment will prevent the cost of expensive orthopedic surgeries and other growing health expenses.

My Motivation and Inspiration

I began receiving the new treatment in 2018 as part of a clinical trial. The medicine improved my quality of life greatly. However, due to the expense of this new treatment I would be unable to afford it if not for the pharmaceutical copay assistance plan. My twenty percent co-insurance for one month's treatment for this one medication runs about $5000.00. And I, like most rare disease patients, am on many other prescription medicines to manage my disease.

As the year progressed and I began filling more prescriptions my co-insurance continued to be applied. I checked with my insurance and found out my out of pocket had not been met. It turned out the payments from the co-pay assistance plan had not been applied to it. This is a common policy insurers use, and it is called a "copay accumulator." They also hired "patient benefit managers" (PBM) to manage specialty pharmacy prescriptions to which i was not made aware of.

The job of the PBM is to shift the cost of specialty prescription medicines from the employer and insurance company to the patient. In this case the insurance company is getting paid TWICE, once by the monetary value of the copay assistance provided by the manufacturer and then again by the patient. It's "double dipping" and it should be illegal. The majority of patients requiring specialty medicines are on fixed incomes and living at or below the poverty level. Insurers and PBMs are forcing patients to choose between medications and rent, utilities or food. Please protect patients and reign in their medical cost by supporting the ban of the unethical practice of copay accumulators.

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