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サマリー
あらすじ・解説
Cystic Fibrosis (CF) is a rare, life threatening inherited disorder that damages the lungs and digestive system. People with CF develop thick and sticky mucus, meaning a person with CF undergoes constant treatments and physiotherapy to function. There is currently no cure for CF. Jessica Bean has been a CF patient for her entire life - and a patient advocate for her whole life - in her spirit, her commitment and her dedication to championing the right and role of patients as participants in Australia's healthcare system. This week, The Impatient Podcast uses Jess' experience as a case study for advocacy. The critical importance of Jess' perspective lays in her ability to capture a lifelong experience with a chronic disease: how the relationship with your health, your body, your therapies, your disease, evolves over time, and the mechanisms you must must have as a patient to make these evolutions seen and understood. Jess has so much to school us on:
- What a clinical trial looks and feels like as a patient participant - and what the statistical results of that trial might show in contrast.
- How treatments may work in ways that matter to patients - and whether patients can actually communicate what matters to the people who make the decisions.
- The guilt that plagues patients who can access therapies that others cannot.
- How to navigate being well enough for a clinical trial but sick enough for compassionate access to a drug.
- The crippling reality that therapeutic approval of a drug or government subsidisation of a drug does not actually equal patient access to a drug.
- Future proofing the Australian health care system that must occur to allow for the innovative drugs that are currently in development.
www.theimpatientpodcast.com.au | i: @theimpatinentpodcast Hosts: Nicole Cooper (@nicolecoopy) & Sean Crank (@seancrank) Guests: Jessica Bean (@jessicabeancoach) Music: Dean Pratt (i: @dean.pratt)
Please note that the impatient podcast contains interviews with patients who share their experiences of the Australian health system, which include personal accounts of acute and chronic health conditions