To those who have influence and an inbox,
Covid-19 vaccine discrimination is not a topic I would typically write about here. But these are not typical times.
And our stories are not neatly styled things designed to fit into perfectly curated squares and feeds. Sometimes our stories have edges that need to be heard.
I am writing to the media to ask you for help bringing awareness to the fact medically high-risk/disabled individuals (of which I am one) are getting deprioritized by the state of Florida for the COVID-19 vaccine due to the executive order issued by Governor DeSantis on Dec 23, 2020 (EO 20-315), and the practicalities that have unfolded accordingly.
I am a 43-year-old business consultant in North East Florida who has been sheltering in place following the death of my mother in May 2020, for whom I was the primary caregiver. I have only left my home when absolutely necessary for medical and other errands I had to be physically present for.
I have a disability resulting in reduced lung capacity that makes me vulnerable to secondary pneumonia. I am also a traumatic brain injury survivor, who is at high risk for the brain-related neurological complications frequently seen with moderate to severe Covid disease.
I am one of the thousands who have in essence been told our lives matter less than able-bodied, lower-risk individuals, who are being bumped to the head of the line for vaccine distribution.
Since the Covid-19 pandemic started, high-risk individuals have been told to stay home to mitigate risk. There has been a steady narrative from government leaders on state and national levels minimizing the impact of Covid by brushing it aside with the “fact” that “only those ill with underlying conditions will die”.
While it may not be intended to communicate a message that devalues the lives of chronically ill and disabled people, that is exactly what is being implied.
The way a community and its leaders value the most vulnerable among them, speaks volumes about what they truly value.Michele Perry
The message we hear is your life doesn’t really count, not as much. Don’t be an inconvenience or worse, an economic liability. This is especially true given the fact the disabled and chronically ill under 65 are now being deprioritized for receiving the vaccine.
Yes, Florida Executive Order 20-315 says “Hospital providers, however, also may vaccinate persons who they deem to be extremely vulnerable to COVID-19.”
But at the time of writing this post, there is no clear path to make this actionable, so the result is those under 65 in the disabled and chronically-ill communities are barred from access.
I have spoken with the hospital system that I am a patient of, my specialists, and my primary care physician. They don’t know any more right now than I do.
And while Florida’s vaccine rollout has been especially egregious in the area of ableist discrimination, this is a nationwide problem.
My story is not unique. I have friends who are pleading with anyone who will listen to address this concern in other states as well… Friends with rare and incurable illnesses like myasthenia gravis, lupus, and MS that are being excluded due to the current vaccine rollout criteria in their respective states. Friends who have been on lockdown for over a year with illnesses that have Covid mortality rates upwards of 25%.
This brings me to the point of vaccination choice and access protocols… The Pfizer and Moderna vaccines currently available are 95% effective against symptomatic infection and nearly 100% effective against severe disease. The Johnson & Johnson vaccine is only 66% effective in moderate infection and 85% against severe disease.
There is also great concern among the high-risk chronically ill and disabled community that we will be forced to take a less effective version of a vaccine.
The potential of not allowing medically high-risk individuals with the greatest chance of severe Covid outcomes to access the most effective versions of the vaccine needs to be clearly addressed. We need a clear policy that gives the ability to treating physicians to prescribe the most effective vaccine for their individual patients.
Those of us with long-term medical risk factors know that we have to be our own advocates.
But we need your help in this situation.
Long-term incurable illness and disability are frequently invisible to the world at large. That means we can be put in discriminatory situations that endanger our welfare because of a lack of awareness, just as much as by policies seemingly more informed by political motives than public health mandates.
Therefore some of us have to step up and speak out to bring awareness to practices that are deeply, and sometimes unintentionally, discriminatory.
My goal in writing this is not to center my story. Or even to have the media talk to me specifically. I am willing to share, but my goal is to highlight the fact the disabled community under 65 is largely being under-represented in the current public narrative regarding vaccine distribution and administration protocols.
We need your help in creating a conversation about these issues in a way that moves the needle in helpful directions for those of us affected by them.
I am choosing to go straight to you in the media because the history of how the pandemic has been (in my opinion) mishandled here in Florida, makes it likely that writing my state and current congressional leaders would, at best, be ineffective in causing change.
Any help you can give by airing coverage that gives voice to these issues would be so appreciated.
Thank you so much for your time and consideration,