Rare Candor

Auteur(s): Pam Squires & Sarah Jones
  • Résumé

  • Welcome to Rare Candor, a podcast for people who live with and love someone with a rare disease. We'll talk about medications, accessing care, navigating everyday lift, policy and insurance issues, and more. Living with a rare disease can be an exhausting, annihilating, scary, lonely, unpredictable and invisible - for the people with their disease and those that love them. We promise not to make you depressed, peppered in humor is guaranteed, albeit likely dark humor - but we trust you will appreciate the rare candor.
    Pam Squires & Sarah Jones
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Épisodes
  • Under the Microscope: Unmasking The Creation of New Treatments
    Feb 6 2025

    The podcast episode dives into the complex and often overlooked process of drug development, highlighting its impact on rare disease communities. Important information for anyone that takes medications! Hosts explore the decade-long journey from molecule discovery to market release, emphasizing the immense financial and regulatory challenges. Guest Ron Cohen, a seasoned pharmaceutical executive, reveals the billion-dollar investments needed and the high failure rates drugs face. The discussion also uncovers the opaque role of pharmacy benefit managers (PBMs) in escalating drug prices. The episode calls for legislative changes to support orphan drugs and improve price transparency, stressing the importance of patient advocacy and legislative awareness.

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    37 min
  • Fighting the System: Breaking Through Prior Authorization Barriers with Tenacity & Grit
    Nov 16 2024

    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.

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    30 min
  • Challenging Diagnosis. Unyielding Courage.
    Sep 22 2024

    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.

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    32 min

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