Vaccinated, boosted and ready to write
What inspired a newsletter by and for people who are immunocompromised
The goal of the Immunocompromised Times is to empower people with weakened immune systems to pursue socially, culturally and civically engaged lives. We shouldn’t have to jeopardize safety for salary or have to choose between physical and mental health.
In early 2022, in an appearance on Good Morning America, Rochelle Walensky, the 19th director of the Centers for Disease Control and Prevention, summarized the results of an efficacy study on fully vaccinated people who got breakthrough infections, concluding, “The overwhelming number of deaths, over 75%, occurred in people who had at least four co-morbidities so really these are people who were unwell to begin with.” Lauding the transfer of burden to the medically vulnerable community as an achievement, Walensky punctuated the announcement with, “the CDC is really encouraged by these results.”
For immunocompromised Americans who looked to the CDC for leadership and protection, this was a galvanizing moment. Many with weakened immune systems were getting vaccinated at the earliest available opportunity and pressing their doctors to run problematic spike protein detection tests. Others were running around un or under protected without even knowing immunocompromised people had been deliberately removed from test studies and that was why they remained more vulnerable than immunocompetent people who had been fully vaccinated.
As the most likely to be hospitalized due to breakthrough infections and to suffer from lingering long haul symptoms post-infection, Walensky’s statement was a brutal reality check. Here was one of the country’s top health officials explicitly and unapologetically confirming the clandestine playbook of pandemic prioritization and hierarchies had quietly devalued us.
As vaxxed and immunocompetent populations cascaded back into classrooms, offices, karaoke bars and gyms, those of us with compromised immune systems remained home with a sword of Damocles hanging over our heads. Do we risk severe illness with the possibility of long term disability or death if we get COVID? What about the social, emotional and economic ramifications of marginalizing our places in the workforce while continuing to maintain remote relationships with friends and family? How would being circumstantially pressed to disclose what, for many of us, had been an invisible disability, impact present perception and future opportunities in our social and professional lives?
One hundred and fifty advocacy organizations signed a response to the Good Morning America interview, saying Walensky’s remarks encapsulate “the exact problem that we, people with disabilities and our family members and allies, have faced the entire pandemic: The public health response to COVID-19 has treated people with disabilities as disposable.” The letter concluded with an actionable list of recommendations the CDC could take in an effort to reverse this trend. Walensky responded that her words were “harmful yet unintentional.” In a follow-up meeting with representatives of several of the letter’s signatories she agreed to subsequent follow up meetings. The damage had been controlled and the news was ready to move on.
As someone who is fully vaccinated and boosted but whose immune system is compromised due to Remicade —the Johnson and Johnson manufactured biologic immunosuppressive medication I take to manage Crohn’s disease— this was a call to action and the springboard from which Immunocompromised Times was launched.
Pre-pandemic, my career arc wasn’t that much different than your typical freelance journalist. Bylines with Westword, Colorado Public Radio, The Denver Post, The Poynter Institute, SpaceDOTcom, The Daily Beast, Scientific American and more. I had a secure content officer gig with a Denver-based private investigation firm. When I left that job in March 2020 and started to write for a Silicon Valley-based tech publication, little did I know that I would be perfectly placed to hone in on things relevant to the transition to remote work. Soon the lockdowns would come and large parts of the country were working the same way: from our kitchen tables, makeshift desks, back porches or home offices. But what if I hadn’t been so fortunate in my work?
Had I been an immunocompromised essential worker; an immunocompromised parent with young kids in school or daycare; an immunocompromised small business owner, dependent on the in-person hospitality industry for revenue, things would have been darker, more dystopian and deterministic. Working from home, I had it easy, working from home and in close proximity to hiking, biking and running trails.
There were Crohn’s related doctor appointments, procedures, infusions and even a visit to urgent care for a broken elbow caused by a bike accident. Winding through open space meadows where buttes separated the front range from the rest of the Rockies I had underestimated the sharpness of a curve.
There was the credit union where cash was folded into an envelope and slid through an opening in plexiglass similar to the one the pharmacist slid prescriptions through after scanning the bar codes of my Clorox ration. I’d express gratitude and try to resist the temptation to get lost in the colorful displays of the seasonal nail polish on the way out.
Indoor in-person interactions were so sparse during those first ten months that I actually managed to keep the two N95s my dad mailed me from his pre-pandemic stash in circulation the entire time, sterilizing them in the oven when storms and prairie wind precluded me from using the noonday sun, mountain air-dry technique.
In the spring of 2021, the results of a Johns Hopkins research study on transplant patients who were immunocompromised demonstrated that only 50% of fully vaccinated immunocompromised patients showed an antibody response to the new vaccines. Dr. Dorry Segev began publicizing his transplant recipient vaccine study and Dr. Anthony Fauci’s enthusiasm for Segev’s work propelled it forward. With a peer reviewed study of the immunocompromised population finally making the rounds things seemed poised for change. Understanding and appreciating what was at stake, Segev was tirelessly advocating on behalf of people with weakened immune systems, balancing the demands of his full-time research and faculty positions, with television and radio interviews.
Segev published a January 2022 New York Times op-ed with William Werbel arguing that, “the immunocompromised also need more information and options from policymakers and doctors on how to protect themselves. Patients and their providers like us are looking to national leadership for urgent guidance. The CDC needs to provide frequent and updated recommendations for things like antibody testing, additional vaccine doses and timing of boosters. The FDA needs to remove blanket restrictions on additional vaccine doses for this group and allow providers to practice personalized medicine for their high-risk patients.”
Ironically, I was getting my 4rd jab the day the January 2022 op-ed ran. I had taken matters into my own hands and tracked down a pharmacy that didn’t require insurance or vaccination history to get my third jab back in August 2021 rather than risk going an indefinite amount of time with inadequate protection.
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As stated with my inaugural article, I am in a position of privilege. This is thanks skills cultivated in the journalism and private investigator industries, thanks to the medical team that manages Crohn’s with Remicade and ran antibody tests and finally, thanks to the antibodies generated by the Moderna vaccine. Segev and Werbel’s op-ed explicitly states that antibody tests “are easily measurable and testing for them is helpful for understanding infection risk in the most vulnerable groups.” Why should only squeaky wheeled, public health bureaucracy hackers like myself enjoy this privilege, though?
To his credit, President Joe Biden mentioned people who were immunocompromised once in the 2022 State of the Union Address and by doing so, did us all a solid. High five to Joe for the acknowledgment. We need more than just acknowledgement, though. Moving forward, immunocompromised accommodations could be incentivized by state and by municipal governments, while paving the way for private sector architectural and interior design firms to initiate ways to improve indoor ventilation and innovate new outdoor gathering spaces. Government could work more directly with the immunocompromised community to understand the challenges they struggle to navigate, further incentivizing private design firms to tap the creativity, resourcefulness, resilience and diversity of these now sidelined Cassandras.
“This isn’t a small group,” argued Ed Yong in a February 2022 article in “The Atlantic” titled, The Millions of People Stuck in Pandemic Limbo: What Does Society Owe the Immunocompromised.
“Close to 3 percent of U.S. adults take immunosuppressive drugs, either to treat cancers or autoimmune disorders or to stop their body from rejecting transplanted organs or stem cells. That makes at least 7 million immunocompromised people—a number that’s already larger than the populations of 36 states, without even including the millions more who have diseases that also hamper immunity, such as AIDS and at least 450 genetic disorders,” wrote the 2021 Pulitzer Prize winner. Yong’s article remains the most rigorous and comprehensive reporting on the immunocompromised community, to date. Popular misconceptions were addressed, challenged and put in context.
“COVID has added burdens to our society; who will bear their weight?” Yong asked. “Immunocompromised people often hear that the world didn’t make accommodations for them before the pandemic and shouldn’t be expected to do so after. But in the past, infectious diseases did prompt big social changes.”
An argument that could have been a game-changer was, yet again, truncated by the fact there were other timely and underreported COVID stories demanding Yong’s attention. As he moved on an Italian study conducted by the Hume Foundation showed that ventilation can cut school COVID cases by 82%. Airlines throughout the United States dropped the proof of vaccination and mask requirements mid-flight and Uber and Lyft decided to make masks optional. Clearly, lengthier discussions need to be happening in the context of making things safer and more accessible for everybody.
That is the long road to get to the why of the “Immunocompromised Times.” I want to broaden my understanding of the needs, challenges, hopes, fears and expectations of other people with compromised immune systems. I won’t have the resources to run sophisticated, scientific polls, however, I have been surveying the “Immunocompromised People are not Expendable” support group. I intend to draw upon existing peer-reviewed scientific research and generate data using the resource available to me. I also want to publish interviews with researchers, disability advocates and historians as well as publish original essays, poetry and comics and hopefully, at some point, podcasts and videos.
Articles will adhere to the Society for Professional Journalists Code of Ethics and make use of resources like the Association of Health Care Journalists to ensure the science discussed is current, evidence-based and peer-reviewed. Although my Substack is still in what I consider to be the “pre-launch” phase it will give you a sense of what I am working on and writing about. Including these interviews I did with Rocky Mountain PBS and The New York Times.
As someone whose productivity is contingent on health, I wont even try to pretend the pen is mightier than the sword or —the needle— in this scenario. It is thanks to the needle that I have the physical and the mental capacity to launch a newsletter addressing the ongoing challenges that people with compromised immune systems continue to face. Protecting my health will enable me to continue unpacking the relevant scientific research, asking questions, running surveys and processing my own experiences while discussing solutions.
You can support my efforts by sharing Immunocompromised Times articles on social media and by forwarding the newsletter to the immunocompromised people that you know personally. If I reach enough people to grow even a modest subscriber base and there is ongoing interest and hopefully enthusiasm I will take the next step and try to establish Immunocompromised Times as a long-term monthly news source.
Thanks for reading Immunocompromised Times ! Subscribe for free to receive new posts and support my work.
I appreciate your views on this! A huge frustration of mine throughout the pandemic is the lack of transparency there has been regarding vaccines, what good they are doing, and what we need to be doing to mitigate public risk.
I especially appreciate that you are reporting on the nuance of people who are disabled and immunocompromised. A lot of the reporting I'm seeing is either "Everything is fine!" or "Hunker down for another year of isolation!!" But in reality, there are a lot of people somewhere in between and who need specialized information. Should a healthy teenage boy who has had Covid get a vaccination and two boosters the same as a lung transplant recipient? These are questions that need more information, not less. Workplaces and the public square need to make reasonable accommodations. And medical decisions need to be discussed by well-informed healthcare providers.
Thanks for your good work.
My partner had a transplant so this is a daily issue for us and our family. When mask mandates fizzled, we only went gout with N 95’s. Travel and socializing are still limited. We’re lucky to be retirees and can remain in our bubble. My heart breaks for all of you having to negotiate the new workplace while trying to have lives.