Rare Candor

Pam Squires & Sarah Jones
  • 5.0 (4)
  • HEALTH & FITNESS

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.

  1. JAN 14

    Unseen Battles: Navigating Kidney Disease with ANCA Vasculitis

    Living with vasculitis—particularly GPA, MPA, and EGPA—is a winding journey filled with trial and error, especially when it comes to kidney damage, a silent but deadly threat. This podcast episode emphasizes practical advice from Laure Larkin, a GPA patient with severe kidney damage, and her wife Lynette. They delve into real-life strategies managing kidney health and the importance of the HEAT Kit—a vital resource for emergency medical situations. Expert tips include monitoring symptoms divided into critical (red) and concerning (yellow) zones, and the essential advocacy needed when dealing with uninformed medical specialists. With insights on breakthrough treatments like avacopan (Tavneos) and the realities of quick-onset kidney crises, this episode is packed with expert advice and authentic patient perspectives to empower anyone facing the unpredictable swings of vasculitis.

    41 min

  2. 10/25/2025

    Unveiling Fasenra: The Newest Treatment for EGPA Vasculitis

    In this episode of 'Rare Candor,' we shed light on the stark reality that 95% of rare diseases are without treatment. Enter Fasenra (benralizumab)—the newest treatment for those navigating eosinophilic granulomatosis with polyangiitis (EGPA). Sarah, alongside Dr. Jessica Most, dives deep into Fasenra's unique mechanism of unleashing natural killer cells to tackle eosinophils. They discuss the importance of treating patients with respect, arming them with all the facts and data they crave. The duo also navigates through safety concerns, dosing intricacies, and the uphill battle with insurance companies. Pam ends the episode by sharing tips to help your doctor, and insurance, wrap their heads around the unique dosing for EGPA. Bold, unapologetic, and utterly essential for anyone in the rare disease community.

    34 min

  3. 07/14/2025

    More Information Please: A Second Opinion Can Change Your Life

    This episode dives deep into the critical topic of second opinions for those battling rare diseases. Emphasizing the often-overlooked value of getting a second—or even third—medical opinion, it compares the practice to seeking multiple quotes for major home repairs. Through a candid conversation with Dr. Samantha Shapiro, a rheumatologist from Johns Hopkins now in private practice doing second opinions, the episode highlights the necessity of expert insights, especially when dealing with complex, rare conditions. The importance of feeling heard, validated, and understood by healthcare providers is stressed, alongside practical tips for securing second opinions, like using platforms such as Second MD and leveraging crowdfunding sources like GoFundMe for financial support. Ultimately, the message is clear: patients deserve comprehensive care and should never settle for mediocre medical advice.

    38 min

  4. 05/22/2025

    Intimacy: Being a Human within the Context of Rare Disease

    This episode dives into the often overlooked topic of intimacy for people living with rare diseases, chronic conditions, and chronic pain. As the hosts highlight, the surge of issues such as weight gain from medications like prednisone, premature menopause from cyclophosphamide, and caregiver role reversals can all affect one's self-image and intimate life. Featuring guest expert Jessica Szymas, a licensed mental health counselor and certified sex therapist, the discussion covers the importance of understanding stress, managing trauma, and exploring the Wheel of Consent. The conversation offers practical advice, such as recognizing desires, negotiating boundaries, and utilizing techniques like the Three Minute Game to reconnect with your partner. Emphasizing the fierce urgency of reclaiming humanity and connection amidst medical struggles, this episode serves as a raw, candid guide for those who refuse to let their conditions dim their intimate lives.

    23 min

  5. 03/26/2025

    Upside Down Incentives: What's Driving Up Drug Prices?

    In this episode of 'Rare Candor,' the author tackles the colossal mess of medication costs, focusing on Pharmacy Benefit Managers (PBMs). Frustration seeps through as the script dissects how PBMs drive up drug prices through lack of transparency and deceptive practices. The author unpacks the Byzantine mechanisms behind list prices and the hidden rebates that enrich everyone but the patient. Through personal anecdotes and policy insights, the discussion highlights the urgent need for legislative change to cap out-of-pocket costs and shift PBMs to a fee-for-service model. It’s a call to rally against a profit-driven system that exploits the sick for corporate gain.

    29 min

  6. 02/06/2025

    Under the Microscope: Unmasking The Creation of New Treatments

    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.

    37 min

  7. 11/16/2024

    Fighting the System: Breaking Through Prior Authorization Barriers with Tenacity & Grit

    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.

    30 min

  8. 09/22/2024

    Challenging Diagnosis. Unyielding Courage.

    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.

    32 min
See All (13)

5
out of 5
4 Ratings

About

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.

Information

  • Creator
    Pam Squires & Sarah Jones
  • Years Active
    2024 - 2026
  • Episodes
    13
  • Rating
    Clean
  • Copyright
    © Pam Squires & Sarah Jones
  • Show Website
    Rare Candor

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