Young Lupus Patients Need a Voice Too
State: South Carolina
Congressional District: SC02
Blood Disease, Chronic Pain, Immune Disease, Mental Health
Issues and Challenges
Jade has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Surprise Billing, Copay Accumulator, Prior Authorization, Step-Therapy / Fail First, Transparency in Health Care
Hello, I’m Jade Nealious! I would describe myself as a free-spirited, unapologetic lupus advocate and warrior who’s determined to not let circumstances dictate my life. Not to mention, I’m a corporate educator, nonprofit founder & executive director, cheerleading coach, and lupus patient leader.
I was diagnosed with systemic lupus erythematosus (SLE), hypogammaglobulinemia, and rheumatoid arthritis my junior year (2004) in high school. 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 recently completed my master’s degree program studying Management and Leadership with Southern Wesleyan University.
I am determined to illustrate there is more to me than lupus. In 2014, I turned an awareness campaign into a nonprofit organization, Crowning Lupus, and have been helping lupus patients ever since. The mission of Crowning Lupus is to ensure that men and women living with lupus, immune deficient disorders, and/or rheumatoid arthritis avoid health differences in access to or availability of medical facilities and services between populations defined by age, ethnicity, economic resources, and/or gender through education, financial access, and advocacy. We provide access to medical, academic, mental, and physical resources to lupus and chronic illness patients. My nonprofit serves lupus patients throughout the state of South Carolina and the Central Savannah River Area, or 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.
When I was first diagnosed with lupus, I had to undergo the step therapy process as my physician attempted to find the medication that worked for me. My physician advocated for a medication that was not FDA approved for lupus patients. To get access, my nurse appealed to my insurer four times before actually receiving full approval. Initially, the insurance company only approved enough that would be equivalent to the tip of my pinky finger. On the second attempt, the dose was still too low. It was only enough for half of my body type. Finally, I was approved with enough dosage on the third attempt. All the while during that process, my physician kept trying different medications and instructing me to stay indoors to keep me alive. I suffered from multiple flares and was forced to home-school because of the frequent hospital visits required. But I was still a minor in high school, and my parents and physician did not give up advocating for me, because I could have been competing in cheerleading competitions, planning for my senior prom, or enjoying Football Friday Night.
Over the years, I have encountered step therapy numerous times, but my physician and nurse continue to appeal with insurance every time. On one occasion, my insurer kept denying a medication and that left me without GAMUNEX®-C for over 7 weeks. So sick, I ended up in the hospital. As soon as I got admitted into the hospital, the medication was approved. Imagine your care, or your child or loved one’s care, not happening until they get the sickest, they can get? Imagine how many opportunities I could have avoided hospitalization if not for step therapy. You don’t have to. Here’s an example: I have been hospitalized 12 times as a result of running out of my medication because my insurer would not authorize it, or insisted I fail some other drug (not recommended by my doctor) first.
Based on a five-year estimate, the average charge for medical care for a person diagnosed with lupus in South Carolina is $6,850 over the average per capita income. That is more than 29% of the average house holds' per capita income. Since 1996, medical charges for lupus patients have totaled more than $1,565,347,206 in South Carolina alone.
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? What do we do to ensure that adult can work his/her full-time job without fear of losing their job because of numerous hospitalizations?
This can change with your help. You can stop this by giving your support to the Safe Step Act which will ensure that insurers don’t force patients to get their sickest before receiving the medications they need to live. The change begins with you. Every patient deserves a chance. That high schooler deserves more Friday Night Lights than hospitalizations. The time is now!
#CrowningLupus #LupusAwareness #LupusAdvocate #ChronicIllness
My Motivation and Inspiration
Inspiration is triggered by the enthusiasm one feels from an action. It is an internal eagerness to complete a task or accomplish a goal. It is a burning sensation that drives you each time you are faced with adversity and the term “no”.
For me, I am motivated by the opportunity to provide resources that create positive atmospheres for those who don’t have a voice. I am driven to ensure the lupus patients of South Carolina and the Central Savannah Regions of Georgia are provided with proper resources to LIVE with lupus. I am inspired by every patient that smiles from a medical bill paid or a successful grocery delivery. I am motivated to provide lupus patients with the same type of mental and physical support my family provides regularly. No to mention, I am inspired to LIVE the best life possible with lupus, while helping others along the way.