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.

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.

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.