Editor's Note: (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.
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.
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.