Despite the well-intended goal of lowering prescription drug costs generally and allowing drug prices for Medicare recipients to be negotiated, there remains much to unravel about the effects of the new Inflation Reduction Act. It will likely save many people money but there is concern, especially regarding the medications for the treatment of rare diseases such as amyloidosis, and about what appears to be a disincentive to pharmaceutical companies to engage in costly research and development to treat these rare diseases. The challenge to diagnosis and providing effective, affordable treatment to amyloidosis patients continues.
Multi-systemic diseases such as amyloidosis are not only complex to diagnose, but also complex in the treatment and ongoing patient care. It takes a village. In this seminal piece, the American College of Cardiology (ACC) provides an Expert Consensus Decision Pathway on Comprehensive Multidisciplinary Care for the Patient With Cardiac Amyloidosis. An absolute must-read for cardiologists and other specialties such as neurology, gastroenterology, nephrology and hematology.
Historically it has been thought that the majority of elderly cardiomyopathy patients diagnosed with amyloidosis, ATTR-CM, transthyretin amyloid cardiomyopathy, suffered from wild-type, a non-genetic version of the disease that most commonly affects but is not exclusive to men over seventy years of age. A study in the UK conducted from January 2010 through August 2022 was conducted to determine whether this was true. Here we summarize their fascinating findings.
Developing one’s “patient voice” can seem unduly intimidating. Advocating one’s position may come natural to some, but terrifying for others, especially when the physician is viewed as the expert. Additionally, many patients may find it difficult to translate their feelings without having a medical vocabulary. Here are some ideas for healthcare professionals to help their patients find their voice.