On this episode of the podcast, Terry and Bob discuss the latest developments in access to treatments for lupus patients. They highlight how ICER’s recent review of lupus treatments threatens access for patients because it inherently underestimates the value of these medications on improving quality of life. They also warn about how ICER is creeping into state policy as state prescription drug pricing boards increasingly consider its recommendations. Numerous state bills regarding drug pricing, including one pending in Colorado, threaten those with rare and chronic diseases.

Terry interviews rheumatologist Dr. Mark Box about clinical treatments for lupus and dealing with insurance companies while preserving the doctor-patient relationship. Dr. Box highlights the importance of access to new lupus treatments to prevent lupus-induced renal failure. He explains how lupus patients often present with wildly different symptoms and disease severity, so step therapy doesn’t apply to treating this disease. Rather, doctors try to tailor their medications for the proper disease level. He notes how new treatments show significant improvements at saving kidneys and preventing patients from ending up on dialysis. 

Patient correspondent Kate Pecora talks with Cheryl Etheredge, founder of Smiles Behind Lupus, on her lupus journey and how she gives back to others through the Lupus Smile Box program, which mails gift boxes to lupus patients to put smiles on their faces. Cheryl discusses how she had to give up her 15-year career in the medical field due to lupus and how she helped fill a gap in the advocate space by creating a YouTube channel that provides vital and much-needed information for lupus patients. Like most patients with rare and chronic diseases, Cheryl highlights how she wants people to see us, not our illness. 

Listen HERE