Voices Across America

My Patient Story

Jade

State: South Carolina
Congressional District: SC02

Diseases

Immune Disease

Issues and Challenges

Jade has encountered: Copay Issues, Insurance Issues, Surprise Billing, Copay Accumulator, Disability, Financial Assistance, Lodging, Premium Payments, Prior Authorization, Step-Therapy / Fail First, Transparency in Health Care

My Story

Hello Everyone, I’m Jade Nealious! I would describe myself as a free-spirited, unapologetic lupus advocate who’s determined to not allow my circumstances dictate my life. Not to mention, I’m a corporate educator, nonprofit founder & executive director, cheerleading coach, lupus warrior, lupus patient leader, and lover of all things that are bright and light.

I was diagnosed with lupus and rheumatoid arthritis my junior year (2004) in high school during my competitive cheerleading years. Despite numerous hospitalizations, I went on to graduate with my bachelor’s degree in mass communications from the University of South Carolina – Go GAMECOCKS! I’m currently pursuing my master’s degree in management and Leadership with Southern Wesleyan University.

Over the years, I was determined to illustrate that there was so much more to me, than lupus. Although I felt my actions portrayed that, I knew I could do more. In 2013, I started a campaign to raise lupus awareness. But that still was not enough for me. In 2014, I turned that campaign into a nonprofit organization, Crowning Lupus, and have been helping lupus patients ever since. My nonprofit serves lupus patients throughout the state of South Carolina and the CSRA regions of Georgia. We also service patients who battle Fibromyalgia, Crohn’s, Rheumatoid Arthritis, and other sister diseases to lupus under our many different programs. The mission of Crowning Lupus is to ensure that men and women living with lupus avoid health disparities through education, finance, and advocacy. We provide access to medical, academic, mental, and physical resources to lupus and chronic illness patients.

And while all of this sounds great, the journey is very difficult and challenging. At times, I found myself crying in frustration because of issues like prior authorization and step therapy. When I was first diagnosed with my lupus, I had to undergo the step therapy process as my physician attempted to find the medication that worked for me. Luckily, my physician not only advocated for me for a medication that was not FDA approved for lupus patients. I resubmitted my appeal three times before actually receiving full approval. On the first attempt, the insurance company only approved enough that would be equivalent to the tip of my pinky finger. On the second attempt, the insurance company approved enough for half of my body type. Finally, on the third attempt, the insurance company approved the amount necessary for my body to adequately respond. Unfortunately, during the entire process, my physician kept trying a number of medications to keep me alive. I suffered from multiple flares and was forced to home-school for a period of time because of the frequent hospital visits during the process. But my parents and my physician did not give up. This was while I was in high school.

Over the years, I have encountered this situation numerous times, but my physician continues to appeal with insurance every time. The worst situation that happened last year was when insurance kept trying to deny a medication and I ended up getting sick from their lack of approval. Ironically, as soon as I got admitted into the hospital, a day later the medication was approved. Imagine your child or loved one’s care being based on them getting the sickest they can get? Imagine how many opportunities I could have avoided getting so sick if I didn’t have to jump through hurdles such as these?

We are left with the question: What is the next step? What do we do now to help that middle or high school child have as normal of a life without having to be pushed to the limits just so he/she can receive the correct medication? The time is now!

My Motivation and Inspiration

I am motivated every day to use my voice to help the next lupus patient avoid the situations I have experienced. Because of my family, I have the desire to fight and speak up and out. My family motivates me to be the best version of myself I can be, while utilizing my talents to help other patients along the way.

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