As four hectic days of symposiums, education sessions, poster sessions, oral sessions, interrupted only by working breakfasts and lunches, as well as shuttles back and forth to our temporary beds came to a close, it was time to reflect. This is a tough schedule for multiple myeloma patients who double as a support group leaders. We leave the hotel well before sunrise and return long after sunset. The chairs are not nice to our iffy bones. The hikes through the immense Orange County Convention Center are a marathon in themselves.
There is a purpose though, and it becomes abundantly clear by the last day. The IMF, through the generous support of some pharmaceutical companies, has been able to bring some of us to this Mecca for experts in blood diseases from around the world as they meet each year to reveal their latest findings. Where do we, as patients and support group leaders, fit into the picture of more than 20,000 oncologists, researchers, clinicians, and pharmaceutical technicians?
This may seem like a staggering number of people representing a lot of the pieces of a picture puzzle, and one really gets a sense of this as we hectically move through the convention center hallways. However, when one backs away from the ASH meeting a little and contemplates, the reality is that these experts are only a small portion of the puzzle—and it is the patients who represent the biggest part of the picture. We are the reason they exist. If not for our naughty genes, we wouldn’t need them and there would be no convention. I propose we could make the case that we were the most important attendees. Ultimately, it is extremely appropriate that we come to ASH, and we are appreciative to the IMF and its supporters that make it all possible.
Twenty thousand: nearly this many of us patients in the US succumb to this cancer each year and more than that are added to our ranks. There are nearly a 100,000 of us in the US, and a couple of million people with multiple myeloma worldwide. As support group leaders, we can bring this information back to our support group members—something their doctors frequently don’t have time to do. We can connect the dots. We can bring hope and empower other patients.
As I introduced myself as a multiple myeloma patient to an IMF Grant Recipient from Japan, he couldn’t disguise his incredulity that I wasn’t in a hospital bed somewhere or at the very least a lot less healthy-looking. Some of these researchers have never met an actual patient to put a face on their efforts, and being able to pursue a ten-minute conversation about their work is priceless. The patient stories presented at the IMF Grant Reception drive home that connection between researcher and patient and give everything profound meaning and purpose.
As this year’s ASH closed with some of the most promising news yet, one of our support group leaders Yelak Biru, who has been living successfully with MM for 20 years, made the final comment which drew loud applause from a room of nearly 10,000. “As we celebrate your many successes in the treatment of multiple myeloma, I urge you to get back to work, as the war is not yet over, but most of all thank you!” This comment and response from the medical community so eloquently made it evident to them the importance of their work and fruits of their progress.