In days past, a cancer patient might have gone to the doctor to receive treatment and return home, never asking questions. But in the last few decades, the way in which patients receive care has radically changed. Patients are waking up to the fact that they will live longer if they become more involved advocates for themselves. Andrew Schorr, founder and host of Patient Power interviews Rafael Fonseca, MD of the Mayo Clinic Scottsdale and Myeloma Crowd founder Jenny Ahlstrom on a video show called Myeloma Awareness: Achieving Better Care Through Advocacy. Advocating for yourself isn't easy when the diagnosis is a complicated disease like multiple myeloma, but taking the reins can mean more years of life, so it's worth the effort. Dr. Fonseca suggests that patients ask questions about their type of myeloma and says that if community oncologists or specialists are intimidated by patients with questions, "it would be a red flag for me." Patients can join online groups or attend meetings, read articles on the Myeloma Crowd or watch Patient Power videos to learn more about myeloma. They can ask about their own type of myeloma, find a myeloma specialist who is an expert in the disease and consider clinical trials at every stage of treatment using the SparkCures tool. "Patients being in the driver's seat is what drives quality care," says Fonseca. This is true for personalized care as well as overall progress moving the field forward in multiple myeloma. There is great information in this Patient Power show from both a patient and doctor's perspective. Watch the show here:Myeloma Awareness: Achieving Better Care Through Advocacy Replay from Patient Power on Vimeo.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.