Last week we caught up with Risa in San Francisco, California. She was nearing 1,200 miles (1,931 kilometers) on her bicycle ride from Canada to Mexico to focus awareness of acromegaly and pituitary disease. We chatted at a cafe not far from the Golden Gate bridge about her experience and what it is like to undertake an effort like this one while managing a challenging disease like acromegaly. Not surprisingly the Fleet Week event in San Francisco created a few distractions as we were recording the podcast. When you hear it, you'll know why. Check out the ride's progress here, and on the Risa Unleashed page.
Dr. Lewis Blevins' discussion on the postoperative evaluation and management of patients with hypercortisolism is technical and directed to physicians, but we encourage everyone to listen to it.
Dr. Blevins takes an in-depth look at Diabetes Insipidus with a specific focus on diagnostic testing. In this podcast, you will be hearing about the risks and benefits of treatment and a detailed review of diagnostic tools, with particular attention to copeptin measurements in conjunction with water deprivation and saline suppression tests. This is critical information as diabetes insipidus can affect 2 to 10% of pituitary patients.
What happens when the insurance company's first line of response is to deny, deny, deny? How does this increase in oversight from third-party payors impact the process of rare pituitary disease medicine authorizations indicated for treatment? Why do insurance companies use these delay tactics? What role do treatment guidelines play? What can we do? In this podcast, PWN cofounder Dr. Lewis Blevins shares his experiences and frustration with these problematic issues.
My conversation with Risa Heidt, who will be riding her bike from Canada to Mexico to promote awareness of rare pituitary diseases: Marisa "Risa" Heidt, diagnosed with acromegaly (a rare disease of the pituitary gland), in 2018, is undertaking this 1845-mile challenge starting this September 11. Click here for more details and what you can do to help.
In today's podcast, we welcome Claire Murphy, Director of the Orphan Drug Congress, to talk about this important, innovative event. The Congress brings together leading industry, government and regulatory authorities, patient advocacy groups, payers, investors, and solution providers, advancing orphan drug development and improving access to life-saving therapies.
With the newly announced launch of the phase 3 trial on Paltusotine, Crinetics new nonpeptide oral drug candidate for acromegaly, we asked Dr. Alessandra Casagrande, their new Medical Science Director, to give us her perspectives on this study.
We recently sat down with members of the acromegaly community to discuss their treatment journeys and the lessons they learned along the way, including how they advocate for themselves and how their experiences can help others do the same. We heard about their journey from the initial diagnosis to treatments, and life with acromegaly during the COVID-19 pandemic. You don’t want to miss this engaging conversation in our latest podcast sponsored by Chiasma.
Rachael Clare was diagnosed with a pituitary macroadenoma at age 21. Now at 28, in a frank and revealing chat, she shares her experiences and struggles with diagnosis and living with hypopituitarism. Her blog, The Mass and Me, gives us an honest look at her story to help bring more awareness to the challenges of this disease.