In early January, while she was helping her grandfather register for a coronavirus vaccine, 21-year-old Sabrina Epstein realized that she was also eligible to be vaccinated in Texas, where her grandfather lived. But in Maryland, where she is a senior studying public health at Johns Hopkins University, she wasn’t eligible. As she started looking more closely at policies, Epstein realized that states across the country had prioritized people with chronic health conditions and disabilities, like hers, either in varied phases or not at all — and according to vastly different definitions and standards.
On Twitter, she began connecting with other people with disabilities, and she discovered that many of them were similarly frustrated, confused or discouraged by their states’ vaccine rollouts. So, Epstein approached her mentor at Johns Hopkins’s Disability Health Research Center, Director Bonnielin Swenor, about creating a resource for people with disabilities to find their state guidelines. Disability activists could also reference it as they advocated for more equitable vaccine distribution, Epstein hoped.
Swenor said she thought it was a great idea and consulted with her friend, Megan Collins, who had worked on a dashboard tracking the vaccine rollout for educators. With a plan in mind, Epstein reached out to Kara Ayers at the Center for Dignity in Healthcare for People with Disabilities to see if her team could provide additional support. The group of seven women, most with disabilities themselves, began compiling state guidelines. On Feb. 8, they launched the COVID-19 Vaccine Prioritization Dashboard.
As states have begun their vaccine rollouts, many have voiced a commitment to equity — especially because people of color have been disproportionately impacted by the pandemic. But few states have partnered with, or even named, the disabled community in their rollout plans. Instead, advocates say, states have relied on incomplete data to determine who is high risk, and they have deprioritized people with disabilities from their rollouts. Epstein and her teammates hope their Vaccine Prioritization Dashboard will help people with disabilities get vaccinated, as well as fill gaps in data to inspire future policy change.
Disability activists and people with disabilities have pointed to three main failures in equitable vaccine rollouts: eligibility lists that do not include all those who are considered high risk; states that have not prioritized people with disabilities; and websites or vaccination sites that are not accessible.
Unlike countries such as the United Kingdom, which recently announced that 60 percent of their covid-19 deaths were people with disabilities, the United States does not collect data on disability the same way it collects data on race or gender identity.
To formulate their vaccine responses, many states referenced a Centers for Disease Control and Prevention list of 12 high-risk conditions, which the CDC said was “not exhaustive and only includes conditions with sufficient evidence to draw conclusions.”
In practice, that has meant that people with rare diseases have not been prioritized for vaccines because not enough data exist to prove they are at high risk for covid-19, advocates say. Swenor said states “are relying on the data that they have,” and Ayers noted that many schedulers answering phones at local health departments are doing the best they can to follow complicated guidelines.
However, Swenor said, “someone, somewhere along the line, has to be committed to filling in these data gaps. And that’s just not been there.”
According to a Feb. 9 letter from the National Council on Disability to the National Governors Association, “29 states have deprioritized people with disabilities” despite guidance to include them in earlier vaccination categories.
People with disabilities say they are contending with other accessibility barriers as well. Many state websites and physical vaccination sites are not ADA accessible. Swenor points to other hurdles, such as “getting to vaccine sites, being able to communicate in that setting, being able to give consent, being able to understand what’s going on, being able to get the information.”
Epstein, Ayers and Swenor said they have all felt these inequities personally.
“I have a chronic illness that’s considered rare, and so it’s not going to be listed in the examples from the CDC,” Epstein said. Small differences in wording, like “these conditions” vs. “such as these conditions,” has meant that she is eligible in some states, but not others. “If whether or not you get a vaccine in your arm is coming down to the clarity of the wording on your State Health Department website, that’s the failure of the public health system,” she said.
Ayers is in a similar position. The Osteogenesis Imperfecta Foundation’s Medical Advisory Council theorized that people like her with OI would be at high risk for lung infections, but because there isn’t enough data to include them on the CDC’s list, many states have not prioritized them. Ayers said she believes that gap in data is a result of not only certain diseases being rare, but also research being underfunded.
While Swenor isn’t at greater risk for infection, she has encountered barriers to testing and vaccine information because she is visually impaired. When she was sick earlier in the pandemic, she couldn’t get tested because all of the sites near her were drive-throughs, she said.
Epstein, Ayers and Swenor are not alone. People with disabilities across the country have been sharing their concerns about the vaccine rollout on social media under hashtags like #NoBodyIsDisposable and #HighRiskCA, a reference to California Democratic Gov. Gavin Newsom’s Jan. 25 decision to eliminate priority groups and implement an age-based system instead. Last week, in response to the criticism, state officials announced that Californians under 65 who have disabilities or severe underlying health conditions will be eligible for the vaccine starting March 15.
In California, Charis Hill, who takes immunosuppressive drugs for their axial spondyloarthritis, will not be prioritized under these guidelines. “Disabled people just in general still are almost always disincluded from diversity and equity work,” Hill said. “We’re just that last listed item that gets forgotten.”
Aubrie Lee, 28, who is considered high risk for covid-19 because her muscular dystrophy causes respiratory weakness and puts her in close contact with caregivers, will only now receive the vaccine after March 15. After a year of seeing her community ignored, Lee said, initially being taken off California’s vaccine priority list was crushing: “Knowing how little society cares about my survival makes me fear for my life.”
Meanwhile, in Maryland, 27-year-old Taylor Givens Kobelja is eligible for a vaccine as an immunocompromised heart transplant patient, but she said that most clinics are not listing patients like her on their websites. “Walgreens and Giant have us on the list, but not CVS or several other local clinics,” she said. (A CVS spokesperson said in a statement: “Some states, including Maryland, require more limited eligibility for COVID-19 vaccinations at pharmacies than at other locations.”)
And in New York, Alessandra Aoife Muller-Thym, 43, is eligible for the vaccine, but she said “there are too many people who can’t get a[n eligibility] letter. This might be from lack of insurance, not having a primary-care physician, ableist doctors” or not being prioritized at all. Inspired by disabled activist Alice Wong’s work on #HighRiskCA, she started using the hashtag #HighRiskNY to draw attention to inequities in New York’s vaccine rollout.
Health officials from California and New York did not respond to requests for comment.
As they developed the Vaccine Prioritization Dashboard, Epstein, Swenor, Ayers and their team tried to keep in mind the immediate needs of the disabled community while collecting data that they hope will drive future policy changes.
“The primary purpose of the tool was to give people the information they need because we recognize how hard it was to find,” Ayers said.
Part of that meant designing a website that would be accessible and available in different formats “so that people with disabilities can find this information,” Swenor said, “because if they just look at their state sites, it’s not always available.”
Even states that consulted with medical experts missed key distribution or accessibility issues in their rollout plans, Ayers said, because they did not consult actual people with disabilities.
“It feels to us like some states are truly engaged and are prioritizing, partnering with the disability community in these decisions. And other states clearly are not,” Swenor said. “They’re making decisions about the disability community without the disability community.”
Going forward, the dashboard team hopes the data they collect will be able to inform future research.
“Our plan is to update this dashboard weekly, and we’re keeping a record of each week’s basic timestamp so we can look at change and shift over time,” Swenor said. “I want to track and see how this prioritization changes” and what outcomes look like in states that prioritize differently.
Epstein hopes that data can be “persuasive for creating more equitable systems going forward.”
“Our voices have not been in the room where these decisions are made,” Epstein said. “This pandemic has shown a lot of holes in the public health system that were already there and are now widening. And we need to move forward, not just by shrinking those gaps back to their previous size, but by closing those gaps.”