Published on May 24, 2021
After COVID-19: What Happens to Patients Who Still Need Masks?
No matter what crisis life brings you, “Where do we go from here?” is a question most of us will ask when it arrives. In my case, the crisis was a diagnosis of multiple myeloma in 2017. Our family’s world crumbled that year, along with 10 of my vertebrae.
It has been four years since my journey began. On May 25, 2017, I experienced my first collapsed vertebrae. I had no idea it was coming. I felt great, was operating a new and thriving business, and had run three miles that morning, training for my next half marathon. Within six weeks, I had six additional collapsed vertebrae, underwent three back operations, and was diagnosed with multiple myeloma. The next 12 months were a struggle due to three more vertebrae collapses and a bone marrow transplant. I was also told at that time that I may not be able to ever walk upright again without a thoracic brace.
Today, I am in remission. I continue to take a maintenance dose of lenalidomide (Revlimid) and have walked 4,000 miles without the brace. I still experience chronic pain, but it is usually tolerable.
Introduction to Mask Wearing and Stigma
One of the major themes of my personal journey with multiple myeloma is the damaging impact of this disease and its associated treatments on my immune system. A weakened immune system has created the need to protect myself by wearing a mask. As is the case for many of us in the immunodeficient or immunocompromised communities, I was advised to wear a mask whenever I was around crowds, and of course, practice impeccable hygiene. Goodbye salad bars…
I held off doing much in public for most of 2018 but then started venturing out in more significant ways in 2019, which was almost a year after my stem cell transplant. During 2019, I attended many public and private events where I needed to wear a mask. At all of these events, I observed that the people around me were uncomfortable. The reactions ranged from subtle, such as someone cutting their eyes away or veering off course to get past me, to blatant, when I was directly asked why I was out in public potentially infecting people.
The stigma around mask-wearing eventually started affecting my actions. I began taking more chances. That risk-tasking behavior eventually landed me in the hospital for a week with a bad case of pneumonia, after I attended a good friend’s wedding and reception without a mask. I got sick from a relatively benign virus that most people get without even knowing it. Two months later, I had pneumonia again – probably from a plane ride I took without a mask.
But it was a trip to Europe in early September 2019 that put me on the path to where I am now. I was beyond careful in terms of mask-wearing, using wipes to clean plane seats and trays, and using antibacterial hand gel. I made it through 12 days and five countries without getting sick, but the adverse reactions I encountered were even more intense.
Finding a Mission and Creating Maskeuraid
It was on that trip that I came up with one of my personal answers to “Where do we go from here?” I concluded that the Western world needed better education on the plight of immunodeficient people and their need to protect themselves. In November of 2019, I incorporated the nonprofit called Maskeuraid (pronounced mask-cure-aid, www.maskeuraid.org) with a mission to focus on advocating for those with primary and secondary immunodeficiencies. Our goal is to utilize technological, human, and financial resources to create a community for patients, caregivers, and the general public that is dedicated to advocacy, education, research, and fundraising. Work started on the 501(c)(3) application at the same time.
Three months later, the world changed in unimaginable ways. Nothing our organization could have done would have educated the public more about masks, hygiene, and the fragility of those with immunodeficiencies than the COVID-19 pandemic did. The term “underlying circumstances” also took on a new, ominous meaning. We continued slowly working on Maskeuraid while monitoring what was going on, especially in the United States.
As the pandemic unfolded, a lot of misinformation about mask-wearing was spread. The pendulum swung back and forth several times. Now, the Centers for Disease Control and Prevention (CDC) is advising fully vaccinated people that it’s safe to shed their masks in most situations. But even though it may be safe for others to stop wearing masks, immunodeficient people will continue to have to protect themselves.
Even considering the changes in the past year, the Maskeuraid mission remains and maybe more important than before the pandemic.
Here’s What We Can Do Next
Our organization has some suggestions on what steps to take next. First is the continued education of the public about immunodeficiencies, whether they are primary or secondary. Advocates across all illnesses who have an immunodeficient community need to incorporate this education into their programs. In many cases, immunodeficiency is a symptom of a more prominent disease, but on the whole, across these silos, there are a significant number of immunodeficient people. We estimate that 8 to 10 percent of the U.S. population falls into these categories. Major disease-related nonprofits, the medical and pharmaceutical industries, and patient advocates all have a critical role to play in raising awareness. Maskeuraid is interested in working across these silos to create “bigger” education.
One of Maskeuraid’s strategies has been to develop a trademarked symbol that can be used to communicate to the general public that the person using it is either immune deficient or compromised. This symbol could be on a mask, hat, or T-shirt, signaling that there is no underlying political statement being made and no risk for transmittable disease. We are simply trying to live as “normal” of a life as possible and protect ourselves at the same time.
The symbol for the Maskeuraid mask is combination of the ribbon commonly used to define cancer and other chronic illnesses and a superhero cape. The initial colors were chosen to represent primary immune deficiencies (blue) and multiple myeloma (burgundy), but the design can be used with any colors.
Another strategy is to work with local businesses to keep in place some of the common-sense practices established during the COVID-19 pandemic. The investment has already been made by their organizations, so why not maintain the newer and cleaner environment? Some examples include consistent wiping down of shopping cart handles in grocery stores by making it easy and convenient for customers to do it themselves, or for businesses like banks to keep hand sanitizer or wipes in strategic locations. Some of these measures can be carried into sports and concert venues. There have even been conversations at our organization about developing a certification program based on these common-sense measures.
Of course, continued research funding for cures, as well as strategies to eliminate or reduce the impact of future public health crises on the immunodeficient, including continued “warp speed” development of new vaccine technologies, is critical. The lessons learned from this pandemic need not be forgotten. Instead, they should be used to keep it from happening again or to protect those who are most affected if it does.
The bottom line is that we should never stop asking the question, “Where do we go from here?”
Michael Padjen is now retired and living in North Carolina with his wife, Sue. He enjoys the time he has been blessed with visiting his grandchildren, walking with his service dog Fynn, advocating, and writing for his own personal blog, www.effcancerblog.com, and for www.blood-cancer.com. He has also published two books, "Untruthful Speech" and "Fynn, The Reluctant Service Dog."
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