Editor’s Note: This article is brought to you by our friends at the Acromegaly Community, and shared with our audience at their request. To learn more about acromegaly, please visit their website, or read our summary here.
As many of you know, there has been an ongoing discussion within the medical community regarding the proposed change in terminology from “Pituitary Adenoma” to “Pituitary Neuroendocrine Tumor (PitNET).”
This change has generated strong opinions from patients, caregivers, and healthcare professionals around the world. Some believe the new terminology more accurately reflects the biology of these tumors, while others have expressed concerns about unintended consequences that may affect patients’ daily lives.
Over the past several years, I have personally heard from patients who report experiencing challenges related to insurance coverage, employment concerns, and even driver’s license issues after their diagnosis was classified differently within medical records. Others feel the change creates unnecessary anxiety by associating a generally benign condition with oncology and cancer-related terminology.
At Acromegaly Community, we believe patient voices must be part of this conversation.
We are conducting a survey to better understand how this nomenclature change has impacted patients with pituitary tumors, including those with acromegaly, Cushing’s disease, prolactinomas, non-functioning adenomas, and other pituitary conditions.
Whether you support the name change, oppose it, or are undecided, your experience matters. We want to collect real-world data that can be shared with clinicians, researchers, advocacy organizations, and policy makers.
Please take a few minutes to complete the survey and share it with others in the pituitary community.
Together, we can ensure that future decisions are informed not only by scientific discussion, but also by the lived experiences of the people most affected.
#PituitaryAdenoma #PitNET #Acromegaly #PituitaryDisease #PatientAdvocacy #RareDisease #PatientVoice
https://ec.europa.eu/eusurvey/runner/Nomenclature
