Background/Purpose: Since my diagnosis with diffuse scleroderma and ILD, I have balanced the roles of patient and young pharmacist. A duality that has surely impacted my approach to managing my condition, deepened my engagement within the healthcare system, strengthened my understanding of pipeline assets for scleroderma, and the pharmacy benefits I have available to afford treatments for my condition.

My symptoms began in high school with RP. Which evolved into more severe symptoms by 2019, while enduring the educational rigor of the pharmacy curriculum. At the time my primary care physician referred me to a rheumatologist, leading to my diagnosis of SSc based on blood tests revealing positive anti-SCL70. The initial treatment with amlodipine helped manage my RP symptoms and began my treatment odyssey from mycophenolate mofetil (MMF) to nintedanib and eventually tocilizumab.

Intervention: Any patient newly diagnosed with a rare disease often faces immense challenges due to the shock of the diagnosis, lack of information about the disease, and uncertainty about what steps to take next. This is especially true for navigating SSc with ILD. Fortunately, my thorough knowledge of therapeutics, understanding of the importance of collaborative specialist care, and experience operating within the healthcare system uniquely equip me to advocate for myself as an expert.

An example of this is my journey navigating my pharmacy benefit through insurance. When my rheumatologist and pulmonologist prescribed tocilizumab, I was aware it was a specialty drug, but this was not explicitly shared with me by my specialists. Faced with a bill of $1,471.80 per month, I leveraged my understanding of manufacturer-sponsored assistance programs to enroll in the program. This process required performing extensive footwork, including multiple calls to my insurance provider and relaying my patient assistance pharmacy benefit group number, BIN, and PCN. Successfully enrolling in the program drastically reduced my out-of-pocket costs to less than $5, alleviating economic stress and enabling me to focus on managing my condition without the burden of financial toxicity.

Maintenance: Relocating to Washington, DC, in mid-March introduced additional challenges to the complexity of my disease, such as establishing new care providers and dealing with insurance transitions. My professional background as a pharmacist prepared me to confront these types of challenges effectively, ensuring continuity of care and access to necessary treatments. This proactive approach has not only helped me maintain my physical health but also significantly improved my mental well-being.

Quality of Life: In closing, my unique perspective as both a patient and a pharmacist has equipped me to navigate the complexities of living with a rare disease. It has strengthened my resolve, reduced financial and emotional stress, and enabled me to maintain a high quality of life despite the challenges posed by SSc with ILD.

« Back to ACR Convergence 2024

ACR Meeting Abstracts - https://acrabstracts.org/abstract/my-journey-with-diffuse-scleroderma-and-interstitial-lung-disease-a-pharmacists-perspective/