With each new advance in medicine comes ethical dilemmas, from fertility treatments and newborn screening, to vaccinations, gene therapies and euthanasia. But rare diseases and the expensive therapies needed to treat them — particularly in an age of scarce economic resources — almost always entail “tragic choices,” warned Avraham Steinberg,…
Moral Dilemmas Complicate Treatment of Rare Diseases, Says Israeli Bioethicist
The medical advisory board of the Pulmonary Fibrosis Foundation (PFF) strongly cautions patients with pulmonary fibrosis (PF) not to receive stem cell or cell-based treatments outside an approved clinical trial. The PFF statement is an update to a first version published in 2015. “We understand that patients are…
Frailty and geriatric conditions, such as incontinence, dizziness, vision impairment, hearing impairment, and falls, are common among older patients with idiopathic pulmonary fibrosis (IPF), a pilot study finds. Recognition of such commonly associated age-related complications may help identify IPF patients at risk of a poorer outcome, researchers suggest. The study,…
While it sounds cliché to talk about the importance of focusing on quality moments in our lives rather than quantity, doing so is how I choose to live and cope with my life-threatening lung disease. I have learned so much since being diagnosed with idiopathic pulmonary fibrosis…
Rare diseases affect about 30 million Americans — roughly the same number as those with type 2 diabetes. Yet only 5 percent of the estimated 7,000 rare diseases known to science have cures or treatments approved by the U.S. Food and Drug Administration (FDA). Raising awareness of those illnesses and highlighting…
Measuring the loss of skeletal muscle mass in the thoracic area using computed tomography (CT) scans may predict clinical outcomes such as survival in patients with idiopathic pulmonary fibrosis (IPF), according to a study. The study, “Thoracic skeletal muscle quantification: low muscle mass is related with worse prognosis…
Months before my idiopathic pulmonary fibrosis (IPF) diagnosis, my wife Rebecca and I met a young engaged couple. Stephanie was a teacher at the school where I worked in Ohio. She’s from Kansas, so I affectionately refer to her as “Dorothy.” Her fiancé, Connor, was in his third year…
The Envisia Genomic Classifier, Veracyte‘s genomic test for improved diagnosis of idiopathic pulmonary fibrosis (IPF), was granted full U.S. coverage by Medicare. The coverage…
Novel selective blockers of the NOX4 enzyme could ease oxidative stress and the subsequent development of fibrosis in lungs and other organs, according to scientists at the University of Arizona. The potential treatments have been licensed to a startup called Fibronox to speed up their development. NOX4, or NADPH…
Upon being diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016, I predicted that many of my relationships would change. What I didn’t know, which might have been the scariest of all the “unknowns,” was how those relationships would change. I often wondered: Will my relationships with my parents get…
