On this episode of the podcast, Terry and Bob discuss ICER’s pending reports on two medications to treat the most severe form of lupus. They worry that ICER’s pattern of undervaluing medicines for patients with rare and chronic diseases will continue with this report. They note how a disproportionate number of lupus patients are African American, highlighting how often ICER threatens drug access for historically marginalized communities. Terry mentions how she’s corresponded with a patient advocate who’s given the patient experience about lupus to ICER.
Terry and Bob talk about a recent Wall Street Journal investigative report showing that hospitals are hiding price data from patients by not indexing their websites to Google and other search engines. Such actions make it very difficult for users to access this price information.
Patient correspondent Kate Pecora interviews patient advocate Mollee Huffman, who tells her story of being diagnosed with lupus and how it impacted her Navy career and day-to-day life. Molly explains that she believes she had a genetic predisposition to lupus that her stressful job in the Navy could have triggered. She discusses how she ignored symptoms of this autoimmune disease, which attacks patients’ healthy cells, and how it wasn’t easy to diagnose. She tells of her lifestyle, her flare-ups, and the medications she uses to manage her condition.