The reason I qualify for a Covid-19 vaccine has nothing to do with the fact that I'm immunocompromised. That needs to change
Kendall Ciesemier is a writer and producer. She co-writes a weekly advice column called We Hate It Here and co-hosts the health podcast That That Don't Kill Me. Follow her on Twitter @kciesemier and Instagram @kendallciesemier. The views expressed in this commentary are her own. View more opinion on CNN.
(CNN)My cell phone rang on a Sunday afternoon in early March and I answered it immediately. It was my friend, a doctor who specializes in epidemiology and infectious diseases. She warned me that the coronavirus was about to surge in New York City and recommended that if I could flee the city and retreat to my parents' house, I should do it, and fast.
I
hung up the phone, called my parents, rented a car, packed my bags and
drove 13 hours from New York City to the suburbs of Chicago the next
morning. Meanwhile, my friends were still going out to dinner and going
into work. I could tell my coworkers and roommate thought I was being
absurd, but I couldn't afford to care about their opinions. I had simply
fought too hard for all 27 years of my life, I couldn't lose it here.
Kendall Ciesemier
I
was born with a rare liver disease resulting in the need for two liver
transplants. As a transplant recipient, I take medication that
suppresses my immune system, leaving me vulnerable to getting sick more
easily and more severely -- and to having a harder time recovering than
most. Because of my condition, I've spent a large portion of the past
year living with my parents, seeing few others.
It's
also why the Covid-19 vaccine is so important for me to receive,
because while it won't change my behavior immediately it will change the
question that weighs on me every time I have to leave my house: If I
contract Covid-19, will I die?
Unfortunately, that fear is not me being paranoid. A recent study showed a 20% mortality rate for solid organ transplant recipients who contract Covid. For context, another study put the Covid mortality rate for those 75 and older at 11.6%. That leaves me with a higher chance of dying from Covid than rolling a "6" on a die.
I
and my young sick peers -- the ones with cancer, with HIV, who have
recovered from a bone marrow, stem cell, or solid organ transplant --
are increasingly becoming deprioritized across the country, sent to the
back of the vaccine line alongside our 20-something healthy peers, those
with lives that are unrecognizable to us.
In fact, despite the new US Department of Health and Human Services recommendations
encouraging states to classify us as group "1b," alongside those over
65 and some essential workers, few states, according to a Kaiser Family Foundation report,
have followed that guidance, placing us in either group "1c" or even
later. Some, like California Gov. Gavin Newsom, are even doing away with
any prioritization for those with high-risk medical conditions and resorting to age qualifications entirely.
While
I don't envy those who have to make prioritization decisions, these
standards are wrong, based on ableist assumptions that tie age to
illness and erase the many young Americans who are living with higher
risk than their grandparents. In some states, caregivers for people who are disabled are eligible right now, but not the disabled people they assist.
And
if you are someone who is thinking that disabled people don't need to
leave their homes, stop. Disabled people live lives as big, as full, and
as necessary as our nondisabled counterparts. What's more: Many of us
have no choice but to access the health care system amidst the pandemic.
Our health needs don't care about the risk we face if we visit our
doctor, require a procedure, surgery, inpatient stay, or physical
therapy.
I'm
a sexual assault and domestic crisis volunteer advocate for four
hospitals in New York City. Given the pandemic, the program offers us
the opportunity to provide virtual or in-person support. However, I just
received an email from the program coordinator notifying me and my
fellow advocates that we qualify for a vaccine under group "1a" as
unaffiliated health care workers.
I'm
now on the hunt for a vaccine, as many are (navigating a system so
frustrating I'd need another op-ed to address: broken websites, canceled
appointments, no communication on availability, and endless hours spent
calling every possible distribution location to be added to a long wait
list), but I can't help but be struck by the irony of the situation.
The reason I qualify for a vaccine has nothing to do with my lifelong
health challenges, but rather my extracurricular status as a health care
volunteer. It's not the reason I'd die, but it's the reason I'm seen by
our government as important enough to save.
I
believe all health care workers on the frontlines should get vaccines,
but I too believe that our government should be more concerned about
looking out for those most vulnerable to Covid-19. Since the time I
drove to my parents' home last March, I've made several trips back and
forth because I'm not entirely comfortable living in New York until I
get vaccinated.
In
New York, Gov. Andrew Cuomo said two weeks ago that immunocompromised
people would be eligible for a vaccine in group "1b" when he announced
eligibility for older New Yorkers and those in essential jobs, but he
then followed by saying that deciding who is immunocompromised "depends on how you define it."
He went on to list many of the conditions that the US Centers for
Disease Control and Prevention has already said made someone more at risk of experiencing severe Covid symptoms,
but he has yet to define its meaning for eligibility, leaving millions
of New Yorkers with severe health conditions waiting and, subsequently,
behind the rest of "1b" who have already booked appointments or are on
wait lists to receive the vaccine.
I know it could take more effort -- especially with limited supply of vaccine doses being allocated to states from the federal government
-- to define which conditions should allow a person to move up the
line, but I believe the effort is worth it and the failure to do so
feels lazy. To me and many like me, living in this pandemic has provided
a daily reminder that our needs are unseen to those around us, that our
lives hold little value to those who refuse to wear masks, who gather
in groups or fly to a vacation destination. This is especially true for
immunocompromised Black and brown people, who are among the most
marginalized. The federal and state governments are adding to that
negligence.
As
someone born with an incurable chronic illness, I grew up aware of my
invisible vulnerability. Being both young and sick, my struggles often
did not register as important to anyone outside of my family because
they weren't shared by enough of my classmates. The vaccine distribution
priorities sadly come as no surprise to me, but I do feel deep
disappointment of the injustice against my community.
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If
leaders across the country continue to abdicate their responsibility of
figuring out a distribution system that sees everyone, I know plenty of
disabled people who are willing to step into an advisory role, happy to
make it their priority.
At
a time that should be provoking deep empathy and meaningful action for
those who are sick and disabled, we are falling short. We need to
reconsider the ways in which we are leaving sick and disabled people
behind once again, amidst a global health pandemic.
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