It amazes me how we, the country, the world, has accommodated and transitioned to a virtual life with such ease over the last 9 months. That’s not say it has been easy or without resistance, trials, and tribulations. However, we’ve engaged technology in way that has allowed us to move forward with a fair degree of ease, at a time when nothing is normal. ASH organizers managed to move an in person annual meeting using a meeting platform built for learning, collaboration, and networking, of more than 20,000 hematology professionals from 110 countries, 250 exhibitors and 200 media outlets (2019 statistics) to an entirely virtual congress in 2020. That was no easy feat I’m sure.
There are so many things that couldn’t be replicated virtually, like the fellowship of colleagues and friends. The video platform of communication cannot replace the human connection of being together. Nonetheless, ASH still managed to offer 4800 abstracts in total, although understandably down from 6000 in 2019. There were 688 abstracts, 170 oral presentations, and 500 posters specifically on myeloma. I’m always in awe by the commitment to myeloma that is shared by researchers and practitioners around the world. It gives me hope.
As I sat through the IMWG Conference Series: ASH 2020 International Myeloma Foundation, I was reminded just how much changes and advances in myeloma treatment each year. The experts themselves express their amazement and excitement with these advances. For instance, it wasn’t long ago that the recommendation for smoldering multiple myeloma (SMM) was to watch and wait. This year, the evidence clearly supported a model of early treatment, recognizing that those with high risk SMM will progress to myeloma. Dr. Joseph Mikhael referred to the cliff analogy for treating SMM, instead of waiting until the SMM patient falls off the cliff, treat as he is approaching the cliff (paraphrased). Regarding frontline therapy, front loading myeloma treatment is very important for a more durable response. The days of holding the best for last, are over! Treat aggressive and early was a message that has also evolved over the recent years. You can view the recorded IMWG Conference Series by clicking the link below.
The overall message that resonated for me was, we are inching closer and closer to a cure! I think it’s important to point out that those of us who are seen by a myeloma specialist will likely see those advances and benefits before those of us who aren’t seen by a specialist. In the myeloma space of advocacy, this message is shouted clearly and loudly. As a support group leader, advocate and patient, I get it! I also get why many of us aren’t may not. I’ve struggles personally for several years now with this exact dilemma. For many of the people in my community, some of whom are underserved and disadvantaged, seeing a specialist is not their real-world reality. For many on the outside of those lenses, it just doesn’t make sense why they aren’t seeing a specialist. I find myself with one foot in both worlds. So, I will attempt to share words of encouragement from both worlds.
If you are a patient without a specialist, I implore you to explore the benefits for you personally seeing a specialist. Write a list of all the reasons you don’t currently have one. Take that list and review those reasons with someone (a support group leader or someone you trust) who can help you process it and help you to cross the hurdles and barriers that may be issues. I can’t help but think that community doctors cannot realistically think through the many options and considerations of treatment options, as does a myeloma specialist who does this and only this every day. So, does that mean that patients seen by general oncologist are being treated based only on the standard treatment recommendations. Not to say that’s wrong, but we know that there are so many options and possibilities that may be better individual options. The video below may help you better understand the need to see a myeloma specialist.
If you are a leader/patient who understands the value and has a specialist, I ask that you commit to meet those who don’t see a specialist where they are. Take time to better understand why they don’t have a specialist. If each of us had a dollar for every time we heard, you need a myeloma specialist, we’d be rich (well maybe not rich, but you know where I’m going). Just saying you need a myeloma specialist can be as ineffective as the “just say no” campaign. It’s not always that simple. Challenges and barriers that many people face is real, for them. Some of these barriers are hard to overcome, but many can we worked out with support. But first, we have to understand what they are. Much like myeloma itself, challenges are individual and different for each of us.
ASH2020 continues to inspire and give me hope! Myeloma, an incurable but treatable cancer has more treatment options than ever. It is my hope that everyone of us can benefit from those treatment options and advances in care.
A special thank you to IMF and sponsors for the opportunity to be a part of the IMF ASH 2020 Team. I appreciate the opportunity to offer hope and give voice as an advocate in the myeloma space.
I wish you all a healthy holiday! Stay well, keep the faith and continue to fight.
Wishing you Hope,
Tiffany H. Williams @MyelomaHope