This episode of 'Rare Candor' delves deep into the intricate and often frustrating world of obtaining medication for rare diseases through insurance. It highlights the struggles of prior authorization, step therapy, and fail-first policies that patients and their doctors face head-on. Featuring insights from Michele Oshman of BIO and physician Stephen Chetham, the discussion underscores the necessity for patients to be relentless advocates for their health. Alongside the exploration of bureaucratic hurdles, practical advice is given on appeals and leveraging pharmaceutical company resources. The narrative is punctuated by candid stories, emphasizing the importance of persistence and community support in overcoming these systemic barriers.

This episode of 'Rare Candor' highlights the lengthy and painful diagnostic journey, it features personal accounts from Laura and Cara, who endured extensive medical visits, emotional exhaustion, and repetitive dismissals by healthcare providers. Laura shares her battle with myasthenia gravis, including misdiagnoses and the frustration of being treated as if her symptoms were imaginary. Cara describes how despite advocating fiercely for herself, she faced significant delays in getting the necessary treatment for GPA.The episode underscores the resilience, determination, and immense courage required to navigate the healthcare system while living with a rare disease. It offers a beacon of hope and solidarity through shared stories and the importance of advocating for oneself despite the systemic challenges. The episode closes with a reflection of the Serenity Prayer, emphasizing acceptance, courage, and wisdom in the face of ongoing struggles.

In this episode of Rare Candor, we navigate the impact that chronic illness, fatigue and loss of stamina has on daily life, the requisite adjustment to newfound limitations, and the guilt shared between patient and partner. Laura Flanders shares the relentless toll Myasthenia Gravis takes on her energy and stamina and the tough adjustments she must make. The discussion dives into the internal conflict of accepting help. Laura vividly recounts her life-altering experiences, from struggling to mow the lawn to making decisions about her career. Her story is a powerful testament to resilience, highlighting the ongoing adaptation required to navigate an unpredictable and often invisible illness. Ultimately, the episode looks at the struggle for balance and acceptance in a life forever changed by chronic disease while stressing the importance of compassionate self-awareness and support systems.