Dying of a disease "I never knew existed"; a mother whose son died of a rare disease urges the FDA to rethink trials for them

Opinion and perspective essays curated by First Opinion editor Patrick Skerrett ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ ‌ 

Sponsored by        An author describes dying of a disease "I never knew about." A health care pricing expert looks at the rise in launch prices for new drugs. The mother of a son who died of a rare disease challenges the FDA to think differently about trials for them. You can read these and the rest of this week's First Opinion essays here. Podcast fans: The First Opinion Podcast is back. This week's episode is a conversation with a pediatric cancer research who has ALS, exploring the slow pace of drug approvals for this and other neurologic conditions. Dying of a disease I never knew existed By Richard B. Woodward Adobe Idiopathic pulmonary fibrosis kills about 40,000 Americans each year, yet few have heard of this "irremediable" lung disease. Read More The FDA needs to be more flexible in assessing treatments for rare diseases, like the one that seemed to help my son By Karen Quandt Maria Fabrizio for STAT Clinical trials for rare diseases can be incredibly valuable. But they can also have devastating limitations. Read More Launch prices: tackling the next drug pricing challenge By Steve Pearson Adobe The Inflation Reduction Act could prompt pharmaceutical companies to push U.S. drug launch prices to even higher levels. Read More Sponsor content by Phlow National Essential Medicine Shortage Awareness Day: A Movement to Fix a Public Health Crisis America's medicine cabinet is dangerously empty. But not for long. Medical professionals, healthcare providers, government officials, and the general public are being asked to join in observing National Essential Medicine Shortage Awareness Day by visiting www.stoptheshortages.com to encourage open dialogue and spark bold action everywhere. Together, we can create a future where every American has access to the essential medicines they deserve. Listen: A doctor with ALS laments the slow pace for drug approval By Patrick Skerrett William Woods talks about living with ALS and watching what he sees as the glacial pace of approving an experimental drug called AMX0035. Read More The FDA got it right with hearing aids. Updating Medicare coverage is next By Nicholas S. Reed and Frank R. Lin Joe Raedle/Getty FDA regulations on OTC hearing aids are a big step forward. Now Medicare needs to cover them, and hearing services provided by audiologists. Read More Breaking the 'corporate medical playbook' that silences physicians' reports of inequity By Pringl Miller Adobe A new organization aims to study the who, what, where, why, and how of workplace injustices and to support those who have been targeted. Read More Health care's shift from covenant to commodity comes with consequences By Peter A. Bonis Gandalf's Gallery/Flickr The shift in health care from a covenant between physician and patient to a commodity chips away at the human connection. Read More Open access to research can close gaps for people with disabilities By Bonnielin Swenor and JR Rizzo Adobe As open access policies regarding research access take shape, the unique barriers faced by people with disabilities must be considered. Read More Congress should not compel Medicare to pay for liquid biopsies By H. Gilbert Welch Gillian Flaccus/AP Until a trial shows that a liquid biopsy to detect early cancer helps more than it harms, Medicare should not be compelled to pay for it. Read More Sunday, September 11, 2022       1 Exchange Pl, Suite 201, Boston, MA 02109 ©2022, All Rights Reserved. I no longer wish to receive STAT emails Update Email Preferences | Contact Us | View In Browser