I have immunodeficiency, but unfortunately that is not the reason for qualifying for the Covid-19 vaccine

(CNN)The cell phone rang on Sunday afternoon in early March and responded immediately. I was a friend of mine who is a doctor specializing 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 escape from New York City and return to my parents’ home, I should do it quickly.

I hung up, called my parents, rented a car, packed up my luggage, and drove from New York City to the suburbs of Chicago for 13 hours the next morning. Meanwhile, my friend was still out for dinner and work. Colleagues and roommates thought they were ridiculous, but couldn’t afford to worry about their opinions. I’ve been fighting hard for 27 years so I couldn’t lose it here.

I was born with a rare liver disease and needed two liver transplants. As a transplant recipient, I’m taking drugs that suppress the immune system, so I’m prone to illness, serious illness, and struggling to recover. Because of my condition, I have lived with my parents for most of the past year and rarely met other people.

That is why it is so important to receive the Covid-19 vaccine. That’s because my behavior doesn’t change right away, but every time I leave home, the questions that weigh heavily on me change. Will I die if I get infected with Covid-19?

Unfortunately, that fear is not that I am delusional.Recent research 20% mortality rate For solid organ transplant recipients infected with Covid.For context, another study placed those Covid mortality rates 75 years and over 11.6%.. Therefore, you are more likely to die on Covid than on a “6” on the dice.

I and my young illness companions (cancer patients with HIV who have recovered from bone marrow, stem cell, or solid organ transplants) are becoming increasingly low priority nationwide and sent behind the vaccine line. I have. A healthy companion in our twenties, a companion living an unrecognizable life.

In fact, despite the new US Department of Health and Human Services Recommendations According to the state, along with people over the age of 65 and some key workers, we encourage the state to classify us as group “1b”. Kaiser Family Foundation Report, Following that guidance, placed in group “1c” or later. Like Governor of California Gavin Newsom, Rely on high-risk medical conditions and age qualifications entirely.

I’m not envious of those who have to prioritize, but these criteria are based on the assumption of disability discrimination that links age to illness and eliminates many young Americans at higher risk than grandparents. Is wrong.To Some states, People’s caregivers Persons with disabilities Target now, But they are not disabled people they support.

And if you think people with disabilities don’t need to leave the house, stop. People with disabilities are as big, fulfilling and living as needed as people without disabilities. Moreover, many of us have no choice but to access the healthcare system in the midst of a pandemic. Our health needs do not care about the risks we face if we visit a doctor or require a procedure, surgery, hospitalization, or physiotherapy.

I am a volunteer advocate for sexual assault and domestic crisis at four hospitals in New York City. Given the pandemic, the program offers us the opportunity to provide virtual or face-to-face support. However, I received an email from the Program Coordinator informing me and my fellow supporters that they are eligible to certify Group “1a” vaccines as unaffiliated health care workers.

As many people do, I’m looking for a vaccine now (navigating the system is so frustrating that I need another distro to deal with it: broken website, canceled No appointments, no availability communication, and endless hours spent calling all possible distributions (where they are added to the long waiting list), but I’m not struck by the irony of the situation I can’t enter. The reason I qualify for the vaccine has nothing to do with my lifelong health challenges, but rather with my extracurricular status as a medical volunteer. That’s not the reason I die, but it’s the reason I’m seen by our government as important enough to save.

I think all front-line healthcare professionals should be vaccinated, but I also believe the government should be more interested in finding the most vulnerable to Covid-19. Since I drove to my parents’ house last March, I haven’t been very comfortable living in New York until I got vaccinated, so I went back and forth several times.

In New York, Governor Andrew Cuomo said two weeks ago when he announced the qualifications for older New Yorkers and those with important jobs, immunocompromised people were eligible for the group “1b” vaccine. But then who has immunodeficiency? “It 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 created someone. High risk of experiencing severe Covid symptomsHowever, he has not yet defined the meaning of eligibility, waiting for millions of New Yorkers in critical health, and then have already booked or waited for a vaccine. Behind the rest of the “1b” listed in.

I know it can take more effort-especially Limited supply of vaccine doses allocated to the state by the federal government -Defining under what conditions a person can move up the line, but it’s worth the effort and I think you’ll feel lazy otherwise. For me and many people like me, living in this pandemic means that our needs are invisible to those around us, people whose lives refuse to wear masks, It reminds us every day that people who gather in groups or fly to vacation destinations are of little value. This is especially true for immunocompromised blacks and browns. These people are the most marginalized. Federal and state governments are increasing their negligence.

Born of an incurable chronic illness, I grew up aware of an invisible vulnerability. My struggle to be young and ill was often not so important to anyone but my family, as it was not shared by a sufficient number of my classmates. Vaccine distribution priorities are sadly not surprising to me, but I am fraudulently deeply disappointed with my community.

If leaders across the country continue to give up their responsibility to come up with a distribution system that everyone can see, I know many people with disabilities who are willing to take the role of advisor and prioritize it. ..

We are not enough at a time when it should cause deep empathy and meaningful behavior for people with illness and disability. In the global health pandemic, we need to rethink how to leave people with illnesses and disabilities behind.

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