The Pituitary World News Podcast pituitaryworldnews

Today's podcast covers my conversation with Jill Sisco, president of the Acromegaly Community, about the recent meetings with the Food and Drug Administration (FDA), the US governmental entity responsible for approving new medications.  Our conversation focuses on the original meeting held in 2021 and a recent listening session where the AC provided additional feedback to the FDA.  These meetings help ensure the FDA considers patient's experiences, needs, and expectations as they provide drug development guidance to pharmaceutical companies.  You can read the original report here.
Jill also briefly mentioned during our chat the "Faces of Hope" initiative they undertook a few years ago.  Here's a link to that photographic essay.  Worth a look! 

On today's podcast and  Cushing's awareness day and month, we bring you a few excerpts from our soon-to-be-released new book on Cushing's. The book's author and Pituitary World News cofounder, Dr. Lewis Blevins, reads from a few selected chapters to give insight into the book's content. We are delighted to present these excerpts to join the many organizations, patients, and healthcare professionals in recognizing Cushing's disease awareness month and day. The book is well underway, with over 37 chapters on the editor's and publisher's desk. The book's release date will be announced shortly. Stay tuned for more information about this exciting project from Pituitary World News. You can read more about the book in this article.

Today’s podcast is about our super athlete friend Risa August and her new book, “The Road Unpaved.”  We first met Risa in 2019 when she came to the Pituitary World News/UCSF patient gathering. We chatted about her experience and and her plans to ride her bike from Canada to Mexico. We followed her herculean effort to ride 1845-plus miles to get from Canada to Mexico on the Pacific Coast Highway, which, as you can imagine, is no picnic for anyone, let alone if you are fighting acromegaly symptoms. It is downright amazing she did it at all. Now, she has written a book about her experience with acromegaly, the ride, and life. Learn more about Risa, her practice, her upcoming plans at Risa Unleashed, read her PWN articles search for Risa or Marisa here, or go to – www.risaaugust.com

The Spanish Endocrine Conference was organized late last year by the "Sociedad Española de Endocrinologia y Nutricion (SEEN). SEEN offers an excellent resource for information to the Spanish-speaking world. Spain and Spanish-speaking countries have been our focus as we seek to develop more content in Spanish for our edition of Pituitary Word New in Español. Today's podcasts covers part of the conference and shares my conversations with three world-renowned Spanish endocrinologists. Don't miss my chat with Dr. Elena Valassi on how Cushing's and acromegaly affect bones and muscles. Dr. Manel Puig Domingo talks about his views on the new nomenclature or terminology between adenomas and neuroendocrine tumors (PitNets), a thorny issues we've been covering from all angles. He also gives us an update on his projects on facial recognition in acromegaly;  a fascinating subject since it could have a considerable impact on the early diagnosis of acromegaly. Lastly, I chatted with my good friend Dr. Javier Salvador, who recently retired from clinical work after almost 50 years as one of Spain's leading endocrinologists and professors at the University of Navarra. We chatted about endocrine education, awareness, technology, early diagnosis, and his new assignment teaching medical ethics. I hope this podcast will give you a new perspective from these leading researchers and physicians tackling these challenging diseases.

In today's podcast, we talk with Giacomo Chiesi, Head of Global Rare Diseases at the Chiesi Group, where he leads a team in developing and marketing treatments for rare and ultra-rare diseases. Chiesi, headquartered in Parma, Italy, is a family-owned enterprise in an industry not known for many family businesses.   Chiesi entered the acromegaly space when the company recently acquired Ireland-based Amryt Pharma, which marketed the acromegaly oral drug MYCAPSSA. As you will hear, Chiesi is a fascinating company with a rich history. It is not only dedicated to rare diseases but also has an unrelenting focus on forward-thinking business practices. We talked at length about their initiatives and position on social responsibility, patient centricity, patient care, and environmentally sustainable practices. Learn more about Chiesi, their plans, and current patient support initiatives like Chiesi Total Care. We are truly delighted to bring you this podcast.

Today's' podcast is a recording of the Pituitary World News talk program that aired live on November 16. The information comes directly from one of the busiest, most successful clinics in the world of pituitary disease. The podcast presents a real-world, honest, in-depth discussion of health insurance denials, how this practice affects patients and physicians, how they use guidelines to muddy the process, oppose individualized care, and question a specialist's decision-making. Although most denials are successfully resolved, they undoubtedly increase costs and produce immeasurable anxiety, often leaving patients with no other choice than to get legal help or take medications that may not be what their specialist physicians prescribe. Insurance denials are real issues facing patients today and are central to a health system that desperately needs a major overhaul. Please listen and share your thoughts.