My goal coming to ASH16 was to inspire and offer hope through blogging and tweeting my experience. As a first time attendee, it was overwhelming to keep up with all the promising data and findings, but the message was clear. If you are a newly diagnosed patient with myeloma, know that we have champions in the field working on our behalf to improve quality of life, increase life expectancy, and ultimately, find a cure for myeloma.
You may have followed the many tweets from IMF Support Group Leaders over the last few days, highlighting countless study findings and descriptive slides. What I found to be most inspiring was the number of studies, articles, and talks specific to myeloma. There were roughly 687 presentations related to myeloma. Think about that for a minute. That’s a lot of research dedicated to treatment and finding a cure for myeloma. It speaks to why we’ve seen so many new drugs in the pipeline over the last few years. It’s also why we can expect to see more new drug regimens, and increasing survival. I can’t speak to the science of any other cancer, but this is encouraging to me!
There was only one topic I found concerning, Racial Disparities in Myeloma. Did you know that myeloma is the most common blood cancer for African Americans, occurring two to three times more than in whites? Only 8% of patients in cancer clinical trials are African Americans. For the first time in the past four days, I have to say, I felt somewhat anxious and disheartened. Black patients are more than 40% less likely to undergo autologous stem cell transplant (ASCT) than white patients. Wait…black patients don’t benefit equally from treatment? That didn’t feel very hopeful. Like a good friend of mine often says, “I feel some kind of way” about the reality that all patients aren’t benefiting from the amazing new treatments available in myeloma. I believe that we are only as strong as our weakest link. Therefore, if black patients aren’t able (for whatever reason) to claim extended remissions and their families aren’t afforded the pleasure of having them share in family milestones, where is the hope in that? Racial disparity is a reality in healthcare, but for a moment it disrupted my four-day run of HOPE.
I understand that we can’t talk about racial disparities without considering socioeconomic status, insurance, and the many factors that contribute to disparities and outcomes. Researchers shared that structural barriers (referral bias, cultural barriers, poor coordination of care, conscious and unconscious bias) in the healthcare system, and differences in individual decision-making among black and white patients likely contribute to disparities. It’s also known that economics, knowledge gaps, and misconceptions play a bigger role in disparities than do race and ethnicity. So there is HOPE because as a support group leader I can make a difference in eliminating racial disparities in myeloma through education and support.
Perhaps, I needed that sense of uneasiness to become fully aware that there is still a lot of work needed so that all myeloma patients experience hope for their progression free and overall survival myeloma journey.
I am grateful for the opportunity to have attended ASH16! My desire was that attending ASH16 would help me launch to a higher degree of actionable hope. ASH didn’t fail: my desire was met. I left with a heightened awareness of what it means to be a leader, advocate, and patient. I do not take this opportunity for granted, and I am inspired to impact my support group and greater community. I only hope that you found hope and inspiration through my experience.
Wishing you Faith and Hope,