John Best, a 31-year-old software engineer from Jersey City, N.J. has no illusions about the danger he faces from Covid-19.
“I’m pretty much resigned to the fact that if I get it, I should probably make a will,” he said in a phone interview last week.
Best spent the majority of 2020 holed up in his apartment, avoiding even going to other parts of his building, including the mailroom.
“I had friends take out my garbage, because the chute was on the other side of my floor,” he said. “I didn’t know who on my floor could be sick. I was that paranoid.”
Best has cerebral palsy, a neurological disorder that affects movement and muscle tone, as well as high blood pressure and his conditions put him at higher risk of respiratory complications and even death from Covid.
Despite having a high-risk condition, he has not been able to get a vaccine appointment and is not sure when he will.
Best is far from alone. The Kaiser Family Foundation estimated that 41.4 million American adults under the age of 65 have underlying medical conditions and disabilities that increase their risk of serious illness from Covid.
But federal and state eligibility rules and low supply mean that many of these patients still have no idea when they might get their chance to be vaccinated. Only 17 states are currently vaccinating people with underlying conditions, according to research by the Kaiser Family Foundation, although the number is expected to increase.
Adding to the confusion is the fact that not all states have announced a list of medical conditions that qualify, while many of the states that have are using the Centers for Disease Control’s list of only 12 high-risk conditions, a non-exhaustive set of guidelines that leaves out millions of sick people, especially those with rarer illnesses.
This has led to anxiety, anger and charges that federal and state governments are sacrificing the sick and disabled by leaving them to fend for themselves while other age groups and professions get priority.
States decide which medical conditions to prioritize for vaccination
Jennifer Kates, researcher and director of global health and HIV policy at Kaiser Family Foundation said that, in principle, the Covid vaccine rollout that began in December has been typical of public health policy in the U.S.
“The federal government provides guidance, but the states have the legal regulatory authority, usually to use that guidance and make decisions about what to do,” she said in a phone interview.
Kates said that means each state is free to determine not only when to vaccinate its high-risk residents, but also which conditions it considers high risk.
While New York offered the shot to patients with certain comorbidities and underlying conditions for the first time this week, states like Colorado say they won’t begin vaccinating people in this group until March, and even then they plan to start with individuals who have two or more qualifying conditions.
Best’s home state of New Jersey is currently vaccinating high-risk groups as part of phase 1B of its rollout. He registered for an appointment with the state’s central scheduling system in January and also with the hospital closest to his home.
A few weeks later, Best said that he received an email from the state telling him he was eligible, but that since then, he has heard nothing about how to actually make an appointment.
“I know it’s a logistical nightmare for everyone. But I feel like we as ordinary people shouldn’t have to be the ones that have to go to chase this down,” he said. “What good is eligibility if somebody won’t give you an appointment?”
Lack of clarity leaves people up in the air and resentful
For Kayle Hill, an apprentice for a nonprofit from Waterbury, Conn. living with a high-risk condition during the Covid pandemic has left her with no choice but to defer even minor medical procedures.
“My wisdom teeth are growing in sideways,” Hill, 24, said in a phone interview. “It causes pain sometimes, and they have gotten infected.”
Hill has rheumatoid arthritis, a severe autoimmune disorder that attacks joints and vital organs that has left her with lung damage. For her, contracting Covid could be dire.
“I’d be screwed,” she said.
She has been leaving her home for medical care she can’t put off, and fear over that has taken a toll.
“I have doctor appointments every two weeks,” Hill said. “It’s really stressful and terrifying. And it’s tiring.”
Even though Gov. Ned Lamont announced the state would open eligibility to people with underlying health conditions soon, Hill still doesn’t know when she’ll be able to get vaccinated. State officials have not yet made a precise timeline and her condition may not be on the list.
Connecticut and New Jersey are two of the states that have given little indication as to which patient populations they will count as high-risk besides the 12 conditions given by the CDC. Both Hill and Best say they are frustrated that lack of a clear policy has left people who are medically vulnerable to both figure out on their own if they qualify and also jockey for priority with other groups such as people over 65 and high-risk professions.
“Just because we’re younger, that should never mean that our lives are worth less,” Best said. “What you want to see is solidarity and meaningful compassion towards marginalized groups and not competition among people who are disproportionately affected.”
Changes needed for federal and state policy
Alessandra Aoife Muller-Thym, 43, is an activist in New York City with gastroparesis, a digestive system disorder, and other conditions that leave her immunocompromised.
Like Hill, Muller-Thym put off getting medical care since the pandemic started last year. But as an activist, Muller-Thym said she spends a lot of time thinking and strategizing about how to secure vaccine access to people with disabilities.
“I’ll tell you right now, there are people who have to go get medical care,” she said in a phone interview. “If you need to be on dialysis, you have to go.”
Muller-Thym said a top priority should be creating a national vaccine policy to prioritize people with underlying conditions.
“There should be federal guidelines about this not left up to states,” she said. “If you’re going to say nationally that all people over 65 should be vaccinated, then you have to say all people who are disabled and have any chronic health condition that puts them at high risk for Covid should be vaccinated.”
The only reason there isn’t a national policy already, she said, is ableism: discrimination against people with illnesses and disabilities.
“Nobody cares about disabled people, except for us,” she said. “And maybe some people who love us in our lives, if we’re lucky enough that they accept us for who we are.”
Muller-Thym wants to change state policy too. She started the hashtag #HighRiskNY in an effort to bring more attention to New Yorkers with underlying conditions who, until this week, had been blocked from getting the vaccine.
The #HighRisk movement was originally started by Alice Wong, another disability rights activist in California but Muller-Thym adapted it for New York with Wong’s blessing. Her goal is for people to use it to reach out to the highest levels of state government.
“We need everyone, disabled people and non-disabled people, to contact the governor and to contact New York’s health commissioner, Howard Zucker, and tell them that all disabled people and all people with chronic health conditions that put them at higher risk for COVID should be granted access for vaccination,” Muller-Thym said.
Although New York began vaccinating some high-risk patients, the list of eligible conditions is only a slightly longer version of the list put out by the CDC, which she said is too short and too limiting.
“They need to amend it to say any condition that makes you immunocompromised, any heart condition that would make you at risk,” Muller-Thym said. “All of that needs to be in there. And it needs to be ASAP.”
A few days ago, Muller-Thym’s physician contacted her with an eligibility letter, a document the state is requiring of high-risk patients to prove they qualify for the vaccine.
“I was relieved to get that letter but it makes me want to fight harder for those who will not be able to access a letter because they don’t have healthcare,” she wrote in an instant message.
With supply still low, Muller-Thym knows that being eligible doesn’t mean she will get an appointment anytime soon. But what she wanted for herself and what she wants for other people with disabilities is an equal chance to wait in line.
“Put me in that situation as soon as possible because I need the vaccine,” she said. “I don’t care if I have to wait. I’m expecting to wait.”
What you can do
State policies that govern pre-existing conditions and vaccine eligibility are changing rapidly. Centralized databases compiled by government bodies and non-profits may not be up to date. Here are three resources for general information and links to each state’s individual vaccine rollout site.
The Kaiser Family Foundation’s report, The Next Phase of Vaccine Distribution: High-Risk Medical Conditions has a sortable table by location and phase and an interactive map showing how many of the CDC’s 12 high-risk conditions included in each state’s plan for prioritization.
The Washington Post’s tracker offers an extremely comprehensive, scrollable summary of each statistics for each state, which groups they are prioritizing and links to states’ individual vaccine rollout sites.
The National Governors Association phased allocation table has information for American territories as well as states. The table also includes links to each state or territory’s official, detailed vaccine rollout plan.
Virginia Jeffries is a journalist in New York City. Since 2020, she has reported on long Covid, medical billing and the U.S. vaccine rollout for ClearHealthCosts. She earned a master’s in journalism from the City University of New York in 2019 and has previously worked for the Forward and Coconuts Singapore.
Before becoming a reporter, she worked in education.
Find her on Twitter and Instagram @virginiajeffr.