"It's just awful to be in this kind of position where you have to honestly argue your worthiness to be in a higher priority. That's an awful way to put it but I'm not sure how else to put it exactly," explained Jackie Holcombe.
Holcombe's daughter. Lindsay, has Down syndrome which places her at a higher-risk for death from COVID-19. Lindsay is one of the estimated 3.8 million North Carolinans under 65 years old that have at least one chronic condition.
When North Carolina first released its vaccination plan people with chronic conditions fell in phase 2. Now, state leaders have made changes that cause Lindsay and others with chronic conditions to wait until group 4, instead prioritizing people 65 years and older and frontline essential workers.
"It's just disheartening to have that dropped. What changed? What changed? I'll be honest here, Lindsay became a little less important to be vaccinated," Holcombe said.
She's not the only one searching for answers. The North Carolina Down Syndrome Alliance said the shift places individuals with Down syndrome in 'unnecessary jeopardy.' The organizations is now demanding the state prioritize them in the plan.
"It's not a matter of please bump someone else down so that we can bump our loved ones up, it's just wanting people to acknowledge that it's risky for people with intellectual and developmental disabilities to get COVID," Holcombe said. "Her risk is higher than so many and we're looking for a place at the table."
And it's not just people with disabilities, the group under 65 with a chronic condition involves cancer patients, individuals with heart conditions and compromised immune systems.
There is a way for people with chronic conditions to get a COVID-19 vaccine before the fourth round if they are older than 65, work in an essential job or live in a congregate care facility.
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When the state revised it's vaccination plan, the new priority allowed for people 65 years old and older to be in the first groups, bypassing those with chronic conditions. This is estimated to add around 1 million people to the line, based on the Census American Community Survey from 2019.
The changes also increased the priority for frontline workers like teachers, grocery store employees and firefighters. This places roughly another 1.7 million North Carolinians ahead of those with chronic conditions.
The North Carolina State Health Department said the updated plan mirrors updated Centers for Disease Control and Prevention recommendations.
"Our goal is to vaccinate as many people as quickly and equitably as possible with very limited supply of vaccines," a NCDHHS spokesperson wrote in an email.
One of the reasons the state decreased the age to 65 from 75 was to be more equitable as minority populations are underrepresented in older populations.
Dr. Crystal Cené, UNC's Health Equity executive director, serves on the state's vaccine advisory committee. She explained the decisions are based on ensuring opportunity for access for all individuals.
"When we think about equity for whatever group, whether we're talking about Blacks or intellectual disabilities or whatever lens we're viewing that from, I think it's important to remember it's about equity of opportunity," Cene said. "I say that because people need to have the opportunity to get this vaccine and we need to modify our strategies to eliminate any barriers for them being able to receive it."
Since the vaccine rollout, Black and Latino populations have been underrepresented in the state's vaccine data.
Cene said there has to be a strategy to provide equal access within the groups that are already eligible. Her team is setting aside doses for marginalized communities and targeting areas around hospitals with high levels of lower income and minority individuals.
"It's again about equity of opportunity. And that's what we're trying to provide is that people get, give them a fair shot, give them the opportunity to get vaccinated," she said.
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She said she does understand the frustration of Holcombe and others.
"I understand this is hard. And it's really hard to feel like you're devalued," Cene said. "Is my life not worth saving? And I don't think that that's the case. I can categorically say, no, I don't. That is not the case. It's not a matter of worth. I think at this point it's a matter of limited supply."
Limited supply that forces health experts to juggle risk and equity when setting priority.
"And that's really hard because, you know, the longer it takes, the more, you know, risk it is that these folks may not survive," Cene acknowledged. "That's why we're in such a push, you know, to get these populations vaccinated, because it literally could be a matter of life or death for them."