Staying Positive and Strong in Times of Crisis: A Prescription for Resilience
December 3, 2020
Now is a very difficult time for everyone. There were 3,157 COVID-19 deaths reported Wednesday, an all-time high for the pandemic, according to CNN, and an increase of about 20% from the previous record of 2,603 set on April 15.
We have experienced a stressful election, an ongoing pandemic, an economic crisis for many, and on top of that, myeloma patients need to focus on achieving or staying in remission! It is important to see a path forward and concentrate on positive news that can encourage faith in a better 2021 and beyond.
The Swiss cheese model for combating
Although this may sound like a bizarre new diet recommendation, this is an old model that assesses multiple levels of protection against disease. Imagine setting up a series of barriers or walls, but none of them is perfect: each has holes in it, like Swiss cheese. If you stack up slices of Swiss cheese like dominoes one after another, you can envisage that something (like COVID-19 virus particles) passing through the holes in the first slice of cheese might encounter fewer holes in the next slice, then holes in different positions in the third slice. After about six slices, not too many COVID-19 particles will have made it all the way through.
What this means is that even when a COVID-19 vaccine is available, and many people have been vaccinated, we will not be totally secure. It will still be important for everyone to wear masks, physically distance, wash your hands, avoid crowds indoors, and rely on (and this is the sixth cheese slice) newer anti-virus treatments. This multi-pronged approach is extraordinarily helpful and can have a major positive impact on controlling the spread of the coronavirus.
What about the vaccines?
Myeloma patients should certainly get the vaccine when it becomes available. Both Pfizer and Moderna have requested emergency authorization from the FDA for their vaccines.
- Moderna’s vaccine, mRNA-1273, had an effectiveness rate above 94%, according to the company. The vaccine also has been shown to be safe, with no new safety concerns identified. Side effects in the majority of recipients were usually fever and aches lasting a day or two. Moderna’s FDA hearing is scheduled for December 17.
- Pfizer reported that their experimental Covid-19 vaccine, called BNT162b2, was at least 90% effective, with no serious vaccine-related safety concerns. Pfizer’s FDA hearing is scheduled for December 10. Its vaccine was approved in the UK on December 2.
- Confusion surrounds the vaccine from AstraZeneca and Oxford University, which was recently shown to be 90% effective at half dosage, but two full-dose shots led to just 62% efficacy. The company is collecting more data. Because of age and compromised immunity, the benefit of the vaccine will be less than for other groups, but nonetheless very valuable.
When can I get a vaccination?
Currently, it seems that vaccination for myeloma patients will be in the second wave of vaccinations, after healthcare and frontline workers, and nursing home residents and staff. This means probably starting sometime in January 2021. The New York Times has created this handy tool for gauging where you stand in the line to receive the vaccine, based on your age, health, occupation, and location.
No side effects have been reported so far that would deter a patient from getting the vaccination. Most likely, we will need to get used to COVID-19 vaccinations, which may be required annually, like the flu vaccination is in order to treat different strains. If we are really lucky, COVID-19 could peter out and not be an ongoing problem — but this seems unlikely.
A timely question is how to reach out effectively to all vulnerable communities to achieve vaccination and other COVID-19 care. A recent article in Nature attempts to untangle the racial divide as it relates to myeloma. Myeloma patient, IMF Board Member and strong patient advocate Yelak Biru is featured in the report, which emphasizes the disproportionately higher likelihood for myeloma in the African-American community and the urgent need for enhanced outreach into this and other communities of color.
Achieving true engagement between these communities and the medical and research communities is a challenge, according to Nature, largely due to “a history of exploitation and mistreatment of minority ethnic groups by researchers.” Earlier this year, the participants at an FDA meeting examined the under-representation of African Americans in myeloma clinical trials.
As with vaccination efforts, myeloma outreach into diverse communities will require much work at a personal level—a challenge during these pandemic times –to gain trust and improve access and outcomes.
In addition, racial and ethnic categories in the U.S. are very complex. Is someone exclusively African American or Hispanic or American Indian or Asian—or perhaps a mixture, emerging from a family’s evolution over the years? This question complicates genetic studies attempting to evaluate why myeloma might be more (or perhaps less) common in certain groups.
A positive story from Iceland
An amazing story of outreach is the IMF-supported iStopMM project. This project is screening the Icelandic population over 40 for the presence of early myeloma disease in the form of MGUS (monoclonal gammopathy of undetermined significance) and SMM (smoldering multiple myeloma). The project has been an enormous success, despite the incredible challenges of reaching out to the most remote regions of Iceland.
A total of 80,743 people (54.2% of Icelanders over 40) gave informed consent. This is the highest participation rate in a clinical study in one nation EVER — and was announced on Twitter by Dr. Sigurdur Kristinsson, the principal investigator from the University of Iceland.
But one problem remained: All participants needed a baseline blood sample to determine if a monoclonal protein (indicating MGUS or SMM) was present. Fortunately, there is a universal health care system and a majority of patients provided (or had available) blood samples as part of ongoing care.
However, as of October 13, 67,804 blood samples were available. The missing/needed samples were from individuals all across Iceland’s more remote communities or within the cities, but out of touch for some reason.
In an effort dubbed “The Final Countdown” and coordinated by Tinna Hallsdottir from the University of Iceland, the goal was to push beyond at least 70,000 blood samples to really enhance the study. The seven “sampling heroes” who reached out to over 30 communities did an amazing job, first by email, then by snail mail, and then (what turned out to be the most effective) phone calls. By the middle of November, over 72,000 samples were received with a new target of 72,500. This well-thought-out, energetic, friendly and coordinated effort produced rapid results and allowed the iStopMM program to reach a new level of great success.
Congratulations to the iStopMM team! We need to follow their lead in other key outreach programs.
I know it seems that this word is everywhere these days, but that is for a reason. We need to enhance our resilience to get through these extraordinary and difficult times. At the recent IMF Support Group Leader Summit, Sue Dunnett discussed the concept of “Coaching Resilience,” offering guidance in improving emotional, mental and physical resilience. Working on all of these levels will be important to get through these coming months in the best shape possible.
As I always emphasize, we WILL get through this together. Let’s be kind, help each other, and stay informed and empowered to move into the uncharted territories of a post-pandemic world.
Dr. Brian G.M. Durie serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.