Voices Across America

My Patient Story

Kathi

State: Michigan
Congressional District: MI08

Diseases

Blood Disease, Ear / Nose / Throat Disease, Eye Disease, Gastrointestinal Disease, Heart Disease, Kidney Disease, Liver Disease, Lung Disease, Neurological Disease, Rare Disease, Skin Disease

Issues and Challenges

Kathi has encountered: Access to Medicine, Copay Issues, Insurance Issues, Rare / Underserved Disease, Copay Accumulator, Financial Assistance

My Story

My name is Kathi Luis and I am a Special Projects Director at the Amyloidosis Foundation. I am here to talk to you today about House Bill 4353 - which passed the House and has been referred to Committee on Health Policy and Human Services - which ensures that all copays count towards deductibles for Michigan families.

For individuals living with rare and chronic conditions, like amyloidosis, out of pocket spending could mean going without food or utilities. Many patients and their families rely on copay assistance programs from manufacturers and nonprofit organizations to afford the medications they need to manage their conditions - these medications rarely have generic alternatives.

What is Amyloidosis?
The disease manifests when proteins called amyloid “misfold” and deposit in organs they don’t belong in, causing those organs to shut down. The organs most affected are the heart, kidneys, GI tract and nervous system, although it can affect any organ in the body EXCEPT the brain. When it affects the brain, it’s called Alzheimer’s. The life expectancy of an amyloidosis patient without treatment is less than 3 years.

I’d like to tell you a short story about a patient we’ll call John. John called us when he found out that the benefit card he had received from the pharmaceutical company was not being applied to his annual out-of-pocket spending. This meant that he was still responsible for the same yearly amount. He and his family knew that they could not afford the medication he was prescribed at $20,000/month and still be able to put food on the table and live in their home that they had lived in for over 20 years. John has since quit taking his life-saving medication.

Unfortunately, insurers continue to introduce new programs like this, called “copay accumulator adjustment programs” that bar all copay assistance from counting toward a patient’s out-of-pocket cost and impede their access to lifesaving and life-enhancing medications. A recent study shows that all 9 Michigan health insurers have language in their 2021 individual health document stating that copay assistance may not be counted. This insurance trend is increasing and will continue to impact more Michiganders without reform.

At a time when Michiganders are already struggling financially from the pandemic, we ask that you put patients’ health first and quickly move HB 4353, copay accumulator reform, with immediate effect so patients can afford their medications, stick to the treatments prescribed by their doctors, and reduce the need for expensive hospitalization.

My Motivation and Inspiration

The many amyloidosis patients that are having such a hard time affording treatment.

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