Patients connecting at a recent Patient Power event It was a Harvard Business School professor, in 1997, who coined the term “disruptive technology." Thanks to Clayton M. Christensen. He understood that new things can shake up an industry or create a new one.  The PC, cell phones, cloud computing are great examples. But in pharmaceuticals, diagnostic testing and, more broadly, in healthcare in general, I would suggest that today’s best example is a human being, the patient. The patient is starting to shake up these industries, because they are getting smarter about their diagnoses, what tests are required and when, what the results mean, what...

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I have been living in Spain for almost three years. As an “e-patient” from America, I have noticed that patients, in a largely government-run system, are less outspoken and seem to be less “self-advocates”. I have found the doctors to be generally good, as they are in the states, but, in my opinion, it still benefits the patient to be more engaged, more educated about their condition, and more empowered. In cancer I think that is especially true because things are changing: a lot of research is underway, treatments are becoming more personalized, and there is more support for other...

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As a patient navigator, young adult cancer survivor and former caregiver, I know what the term “empowered patient” means. It’s a concept where knowledge about your disease is powerful, and advocating for your own quality healthcare aids in your survivorship. There are a checklist of questions I can arm you with along with disease related information and education—all of the things that make you a more informed patient. And while all of those things are relevant and even critical, the fact of the matter is all the tools in the work shed won’t ensure that you can build a house...

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En la jornada para pacientes de mieloma múltiple que celebramos el 11 de octubre en el Hospital Vall d'Hebron de Barcelona pudimos comprobar que los pacientes están hambrientos de conocimiento sobre su enfermedad. Y que los médicos prefieren trabajar con un paciente informado, pues les pueden explicar mejor cómo le funciona el tratamiento, qué efectos secundarios está sintiendo...   En este vídeo -realizado en inglés y en español  para poder promocionarlo a nivel global- podéis ver las sensaciones de los pacientes sobre la jornada, la opinión de los médicos y cómo pudimos cumplir con nuestro objetivo: empoderar a los pacientes con...

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Caregiver and Patient at the Patient Power Myeloma Forum in Barcelona When I was first diagnosed with chronic lymphocytic leukemia (CLL) in 1996, I just wanted the doctor to heal me. I dreamed of a magic wand that a healthcare provider could wave that would take the disease away as suddenly as it had appeared for me (even though it had probably been developing for years, I just didn’t know it!). No such luck, of course. So what followed was a total disruption to my life. Fear, sleeplessness, psychological counseling, and a long procession of diagnostic tests and years of...

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My name is Margo, and I was diagnosed with PV in late spring of 2014.   Probably like many of you with an MPN diagnosis, it was incidental.  I was attending a special event and did not feel well.  This led to a series of steps, which brought me to Dr. Brady Stein, a wonderful doctor.  I came to our first appointment with a single-spaced narrative and set of questions about red blood cell production.  He leaned forward and told me the study of MPNs was his life’s work and that he would take good care of me.  And as I...

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Social media that connects me with other people with cancer—especially the specific cancers I have dealt with—has been a godsend to me. In 1996, when I was diagnosed with chronic lymphocytic leukemia (CLL)—a disease I had never heard of—it was other patients on the original ACOR.org listserv that connected me with an expert in my condition and gave me emotional support. That connection saved my life, because I learned about an important clinical trial and was put in touch with other “list members” who were already in the trial that was proposed for me. They encouraged me to enter; I...

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In short, YES. It’s the only way treatment is advanced in diseases like multiple myeloma and has resulted in FDA approval of six drugs for myeloma treatment in the last 11 years...with more coming.  We don’t have a cure yet, but I’ve seen survival averages double, even triple since I was diagnosed 20 years ago.  And how did these therapies come about? Myeloma patients participating in clinical trials. In short, there are three phases of clinical trials: I-determine maximum tolerated dosage; II-determines if the new treatment works; and III-compares new treatment to standard of care.  There are trials for all...

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I had recently retired and started to get busy with my projects when I paused briefly for a routine physical—no worries, just a quick in-and-out and back to the fun stuff. But wait. There’s more—like the doctor bringing me back in to his office, and closing the door. “We have confirmed that you have cancer. It’s not curable. It’s called multiple myeloma, and you probably have three, maybe four years left,” he said. It was March 8, 2012. Well, the next couple of days were mostly a blur of trying to figure out just what this was all about, this...

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Susan Bottega and her husband, Bob As I listened to Esther tell her story, my own came flooding back to me. My husband was always the "tough guy"—nothing was too heavy for him...literally. He was very "old school"—wanted to be the "man" of the family—and I should be the "weaker woman." Well, that never really existed—maybe only in his head. I'm an RN with many years of experience. One might think that is an advantage, but it also has its inherent difficulties. It robs you of the time to take in what is dealt to you—you instantly know where you...

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