Episode 07 - Patient to Advocate

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.

Sean and Nicole are so grateful as always for the vulnerability shown by Jess during her discussion with us. Jess has seen a hole in our health system that cannot be unseen, and chooses to do something about it. Everyday. For all of us. Jess is our ultimate patient and system expert package, captured in her role as President and Secretary of Patient Voice Initiative: visit PVI for information about decision-making bodies, tips, resources, and pathways to patient participation in our healthcare system. https://www.patientvoiceinitiative.org

 

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