Voices Across America

My Patient Story

Shannon

State: Alabama
Congressional District: AL02

Diseases

Bone / Muscle Disease, Genetic Disease, Rare Disease

Issues and Challenges

Shannon has encountered: Access to Expert Providers, Copay Issues, Copay Accumulator, Financial Assistance

My Story

I am a third generation rare disease patient. My father and his mother also were affected by this debilitating metabolic bone disease, X-linked Hypophosphatemia or XLH.

My dad was my hero! He lived life to the fullest never backing down from a challenge despite being in constant pain. As a child he underwent multiple orthopedic surgeries, even being placed in a body cast. Living with XLH made him a determined and strong willed person. These are characteristics he instilled into me.

Navigating life with a rare disease is extremely difficult, especially finding access to expert providers. As a child my parents had to drive two and a half hours for me to see a specialist. Now as an adult I travel three states away to be treated by a XLH specialist. For someone with a rare disease this is an extreme burden both physically and financially.

XLH is not a curable disease but in 2019 it became one of the 5-7 percent of the 7,000 rare diseases to have a treatment approved by the FDA. This new treatment will prevent cost of expensive orthopedic surgeries and other growing health expenses.

I began receiving the new treatment in 2016 as part of a clinic trial. The medicine improved my quality of life greatly. However, due to the expense of the 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 runs about $5,000.00. Due to the many symptoms and complications of XLH I am on many other prescription medicines as are most rare disease patients. 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 nor were the payments from the co-pay assistance plan applied to it. I soon found out the insurance company begun using a program called "copay accumulator." They had also hired "patient benefit managers" (PBM) to manage speciality pharmacy prescriptions to which I was not made aware of. In this case the insurance company is getting paid TWICE, once by the copay assistance plan and again by me, the patient. This practice is called "double dipping" and is unethical and should be illegal. The majority of patients requiring specialty medicines are on fixed incomes and living at or below poverty level. Insurers are forcing patients to choose between medications and rent, utilities or food.

My Motivation and Inspiration

My rare disease journey has inspired me to use my voice as a patient advocate. The physical and financial burdens of being treated are very overwhelming on rare disease patients. I hope by sharing my story I will raise awareness and support in our community, state, and on Capitol Hill to facilitate change and alleviate these burdens.

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