To register for a vaccine appointment, visit healthvermont.gov/MyVaccine (preferred) or call 855-722-7878.
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Piper Harrell was sure her husband, Peter Goetz, would get Covid vaccine.
He had diabetes, after all, one of the 10 preexisting conditions listed by the state Department of Health as putting people at higher risk. Then she took a closer look.
He has Type 1, not Type 2, diabetes, meaning he wouldn’t in fact qualify.
“Looking at the list, it was like, you gotta be f-ing kidding me,” Harrell said. “It was like a punch in the gut.”
A lack of prioritization could mean several more months of “living like monks” at their home in Cornwall to protect the 41-year-old Goetz. That means making her middle school daughter stay home from school after a Covid case was reported there, saying no to outings and social get-togethers, Harrell said.
Harrell turned to local activism to promote her cause, writing to the health department, reaching out to Sen. Bernie Sanders, and contacting other Type 1 diabetics. “I’m not asking for a whole other disease to be added” to the prioritization list, she said. “I think it was just overlooked.”
Harrell is one of a number of people questioning the state’s choice of which high-risk Vermonters to prioritize for a vaccine and why. They argue the Department of Health’s list is based more on convenience than on science.
Vermont will vaccinate high-risk residents after the state finishes inoculating everyone over age 65. In January, the state announced a list of health conditions that will determine who is at the front of the line in the next stages of vaccination, which largely mirrored the Centers for Disease Control’s list of health conditions that put people “at increased risk of severe illness.”
That list includes chronic kidney disease, cancer, obesity, Type 2 diabetes, chronic obstructive pulmonary disease, Down syndrome, heart conditions, pregnancy, sickle cell disease, and immunocompromised transplant patients. The Vermont list excludes smoking, which is on the CDC list.
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The state has defended the prioritization of the oldest Vermonters by pointing to death data that shows the vast majority of deaths are among Vermonters 65 and over. But Vermonters with underlying conditions say the state isn’t considering the risks they face in their day-to-day lives.
They also questioned whether the CDC list was the best way to determine whether someone could have severe complications from the disease, especially as the science is still developing. Emerging research has shown that Type 1 diabetes, for example, can lead to severe complications from Covid.
“The differences between [Type 1 and Type 2] are significant enough that they do warrant different considerations in terms of treatments,” said William Ransom, a Strafford resident with Type 1 diabetes. But differentiating them for a vaccine? “Unwise,” he said.
When it comes to what exactly puts a person at high risk of death due to Covid, “there are some disagreements … on which factor has the strongest effect and how strong the effects are,” acknowledged Nilanjan Chatterjee, a professor of biostatistics and genetic epidemiology at Johns Hopkins University.
The research on Covid is new and evolving. But ultimately, the variations between studies are small — a matter of degree, not substance, he said.
The largest study on high-risk conditions comes from the United Kingdom, which used National Health Service records to compare millions of patients with and without Covid, Chatterjee said. The CDC has conducted research on health conditions using Covid hospitalization records.
Some scientific analyses don’t look just at whether a person has a high-risk condition, but also at their overall “risk score,” which allows doctors and researchers to examine someone’s health and likelihood of complications, Chatterjee said.
Most vaccination programs, including Vermont’s, don’t rely on that score. “That’s not how the vaccination is working, because maybe that score, although I think [it’s] scientifically more rigorous, logistically is difficult,” Chatterjee said.
The state is continuing to focus on vaccinating those at highest risk of dying due to Covid, said Ben Truman, a spokesperson for the Department of Health.
“With the currently limited amount of vaccine available and a goal of decreasing severe disease and death, prioritizing those known to be at risk was chosen,” Truman wrote.
Type 1 diabetes is still in the “might be at risk” CDC group, he said. “There is new evidence coming out all the time, as Covid is new,” he wrote, and the state’s priority list could change.
Smoking was left off the Vermont list, Truman said, because it was “a contributing risk factor” to the conditions already on the list, “and has not independently been associated with deaths from Covid-19 in Vermont.”
On the list
Mario Pannone has polycystic kidney disease, and his kidneys are at only 27% function.
If he lived in New Hampshire, he would be eligible for a vaccine under the state’s Phase 1B guidelines, which allow any resident with two or more underlying health conditions to register. But he lives in Winhall, Vermont, and he does not qualify.
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Meanwhile, Pannone has faced a difficult decision: CDC guidelines say he should not work due to the overwhelming risk of complications should he get Covid. But as the sole proprietor of a heating system repair company, he’s not able to quit. “If I don’t work, we don’t eat,” he said.
He worries about his exposure from being in close contact with others as he makes his repairs. Some people refuse to wear a mask, saying, “‘Oh, it’s my house,’” he said.
“OK, but I have something that if you get me sick, I could be dead,” he said. “I have to go home to my family.”
Khristen Pannone, Mario’s wife, said she’s written to Dr. Mark Levine, the state health commissioner, seeking answers on the state’s decision to not prioritize her husband.
Levine wrote that “the soonest my husband would get a vaccine is April,” Khristen Pannone said. “And to me, that’s just unacceptable. You’re asking him to continue to go and work on a daily basis, and you’re telling him the soonest you can protect him is April?”
Vermonters with prioritized conditions will likely get the vaccine weeks, perhaps months, before they would have otherwise.That time difference matters, Chatterjee said.
A good vaccination policy “can save a lot of lives, especially if you recall that currently the infection rate is very high,” he said. “A lot of people are dying.”
But people with high-risk conditions say the Department of Health hasn’t been transparent enough about the justification for putting them in line after older Vermonters.
One high-risk state worker, who asked not to be named so she could talk freely about her health conditions, said early messages from the Department of Health led her to think she’d be high on the list. She has a history of lung cancer that has left her with permanent tissue damage, and she was “devastated” when she heard the next steps of vaccination wouldn’t include her.
The woman wondered whether the state’s decision to base vaccine prioritization on Vermont death data was the most effective strategy.
Vermont has had a relatively low number of Covid deaths, and many of those deaths were among residents of long-term care facilities, a potential factor that could throw off data analyses. The health department has said previously that the data is the appropriate basis for the state’s prioritization approach.
Mario Pannone is also unsure of what he’ll need in order to prove he has a high-risk condition. The health department has said it is still working on that process.
“If we get all these vaccines, we’re not even going to know what to do with them because we haven’t even started to identify people with underlying medical conditions,” Khristen Pannone said.
A matter of access
Proving that you have a high-risk condition, or even understanding that you have one, may also be a challenge for historically marginalized communities, particularly those that face issues with health care access.
Kathy McDonald, a professor at the Johns Hopkins School of Nursing, has studied diagnostic disparities in medicine. She said people who are “socially vulnerable” in terms of income, housing, immigrant status or other factors face diagnostic disparities in two ways: Not getting a fast or accurate diagnosis of their condition and not having that diagnosis explained properly.
Some of the conditions on Vermont’s list could lead to diagnostic disparities. Cancer, for example, is less likely to be diagnosed at an early stage, and heart failure is diagnosed later in some groups, McDonald said.
People who don’t have easy access to health care might not even understand they’re at higher risk of getting severe cases of Covid if they haven’t visited a doctor recently, or had a clear explanation of the risks of their disease, she said.
Inequality in vaccination outreach is already a concern for some advocates, who point to the fact that people of color in Vermont are getting vaccinated at a lower rate than white Vermonters.
Truman said diagnostic disparities “may be a concern for a small group of Vermonters,” but the high rates of health insurance and primary care usage are “reassuring.”
The Department of Health has committed to reach out to Black, Indigenous and people of color communities, he said. He encouraged Vermonters to stay up to date on the vaccine rollout via the health department website, where any updates will be announced on who can be vaccinated.
High-risk Vermonters fear that the vaccination process will feed into another type of inequality: ableism.
The state worker said she feels fortunate to be able to work from home. But the decision to not prioritize high-risk Vermonters feels like the latest in a long list of ways she’s been marginalized for her chronic illness.
The resources required to deal with her cancer and other health issues, including severe arthritis, have piled up. She faces judgment when she asks for accommodation for her health problems.
“It feels like, what’s the value of your life [to others]?” she said. “I try not to have it in the forefront of my mind, because it feels like self pity. But sometimes it feels like they’re frustrated you exist.”
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