Reflecting back on what we saw and heard at ASH 15, IMF support group leaders (SGLs) left Orlando with great hope for success against myeloma. Three new drug approvals in the two weeks preceding ASH were the talk of the meeting. Direct attack on myeloma cells by monoclonal antibodies gives us a new weapon with proven efficacy and minimal safety concerns. Checkpoint inhibitors combined with immunomodulatory drugs (IMiDs) have great theoretic implications, and we are only beginning to study this combination approach. In one of my many tweets at ASH, I mentioned that I have never been as optimistic about the future as I am today. Considering my cautious “prepare for the worst, hope for the best” nature, that is quite a statement. Dr. Durie has also always shown caution and has never been one to make hopeful claims and disguise them as predictions. With his enormous credibility when he speaks optimistically about a cure, everyone sits up straighter and listens closely. Go Black Swan!
Medicine is a career in which change is a constant. I finished med school in 1974 filled with current knowledge, up-to-date, and anxious to help my patients. What I knew then, except of course for the basics of physical diagnosis, is ancient history. Doctors must continually re-educate themselves. In the 1970s and 1980s, re-education meant reading medical journals and attending update meetings. Today’s physicians must be adept at electronic health records, and quick to access new information with technology that did not even exist in the 1970s. Above all, they must adapt to and accept the reality of the Internet and the unimagined power of social media.
Myeloma support group members now go to doctor visits armed with information and cogent questions. At ASH15, the exploding power of Twitter was the subject of a hugely popular session for attendees. The meeting was simultaneously spread to the world by tweeters at the meeting, and we could watch immediate tweets continuously roll on a screen at the front of the room. A follow-up article in the ASH News Daily explained this remarkable informative power with an article entitled, “So You Know How to Treat, But Do You Know How to Tweet?” Witnessing the exponential rise of Twitter from ASH14 to ASH15 has been stunning to me. Symplur reports there were 31,257 tweets from ASH15 from 5,064 participants. We, the 15 IMF SGLs, added significantly to that total as we tweeted what we witnessed at ASH15 to the myeloma community. For a summary of all our tweets, use this hashtag: #IMFASH15.
ASH is where hardworking researchers present their new ideas, pre-clinical findings, early trial and concept developments, and share them with 25,000 ASH attendees of fellow scientists, patients, and the watching world. It is unmatched in hematological importance. For IMF support group leaders attending and reporting, it can be described as exhilarating, exhausting, demanding, rewarding, and half a dozen other conflicting adjectives. We look forward to it every year and know it will require at least three days at home before ‘must-do’ items are accomplished and lost sleep is caught up. Above all, ASH is absolutely worthwhile and a unique experience every year.
THANK YOU, IMF for your foresight in bringing patients to ASH. Other advocate communities are just beginning to learn what the IMF has known for a long time . . . patients need and deserve to be part of the whole process. Thank you Susie Novis Durie for your leadership and 25 years of service for patients.