This has been a weird start to 2021, speaking for myself at least. As if surviving during a pandemic wasn’t challenging enough, high-risk people all over the US and globally are fighting for vaccine equity. Below is an interview with Sabrina Epstein, a Public Health Studies major who serves as a student researcher and communications intern for the Disability Health Research Center at Johns Hopkins University. Sabrina will share about her interest in public health and the creation of a COVID-19 Vaccine Prioritization Dashboard.
Please tell me a little about yourself!
I am a disabled and chronically ill college student in my last semester at Johns Hopkins University in Baltimore, Maryland.
How have you been coping so far in the past 11+ months into the pandemic?
One of the most difficult things for me has been managing my medical care during the pandemic. My chronic illnesses require regular complex medical care from a team of doctors and physical therapists across Baltimore. I am constantly forced to choose between staying home and remaining safe from COVID while jeopardizing my long term health or going to the doctor to take care of my chronic illness needs while risking exposure to the virus.
You are a public health major at Johns Hopkins University and a researcher and communications intern for the Disability Health Research Center. What led you to go into public health?
I have experienced the failures of our US medical system for disabled patients firsthand. The public health field provides a wealth of opportunities to fix these problems. Admittedly, the public health field is lacking in disability inclusion, but many advocates are working to change that.
What do you enjoy about research and your work at the Disability Health Research Center?
Working at the Disability Health Research Center has been the first time in my academic career where I did not have to fight to include disability. By removing that barrier, I have been able to explore disability issues in this field in much more depth. Our team includes many disabled people, so we often need to be creative in finding accessible approaches to research, which I really enjoy.
I saw you Tweet on February 8, 2021 about the launch of the COVID-19 Vaccine Prioritization Dashboard, created as a partnership between the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities. Can you tell me more about the origins of this dashboard and your role in creating it?
I began thinking about this dashboard because of my own frustration in trying to identify whether I qualify for a COVID-19 vaccine. I live in Maryland, but I was helping my grandfather register in Texas, and I realized that I would qualify for a vaccine at that time in Texas but not in Maryland. As I began exploring it further, I realized that many different definitions of high-risk chronic conditions were floating about, only some of which included my combination of chronic conditions. In talking to friends in the disability community, I learned that this is a shared frustration, and I wanted to create a tool that would both help people identify whether they qualified and help advocates identify best practices and gaps in vaccine prioritization.
What was the process like creating the dashboard and who are some of your colleagues that were involved in this project ?
I brought this idea to my supervisor, Dr. Bonnielin Swenor, as well as Dr. Kara Ayers, who runs the Center for Dignity in Healthcare for People with Disabilities. We talked to the team running the educator vaccine prioritization tracker at Hopkins in order to determine what the project would entail. We brought on a wonderful team, including Sarah Phillips and Leah Smith, to manually go through the states’ websites and identify the relevant phases and their definitions. I then created the webpage to extract the data from our spreadsheet and show it in a fairly accessible way. I am so lucky to have a wonderful team that includes many disabled people who are passionate about this issue both personally and professionally.
What is the purpose of this dashboard and what are your hopes for how disabled activists can use this data?
Right now, the vaccine information is decentralized across dozens of different state and local websites, many of which are inaccessible. I am hoping that disabled people can use this tool to find this information that is relevant to them and in an accessible format. Additionally, advocates working towards a more equitable vaccine prioritization system in their state can compare across other states, and advocates working nationally can identify key gaps. As we know, prioritization is just one part of the problem, but I am hoping we can at least help address this piece of the issue.
On January 25th Governor Newsom of California announced that he would lift the regional stay-at-home orders across the state allowing counties to gradually re-open. In addition to this, there was a major change in vaccine eligibility guidelines in the next round that would go by age versus risk. What is the situation in Maryland for high-risk people under 65?
In Maryland, most people with chronic conditions like myself do not qualify until phase 2, which in our state comes after 1A, B, and C. Phase 1B includes people with intellectual and developmental disabilities, but many of the private vaccine providers and local health departments are focusing on other prioritized groups while people with I/DD get left behind. Additionally, I am very frustrated that the vaccine registration system is completely decentralized and mostly online, making it inaccessible for disabled people, older adults, people with limited internet access, and more.
I’m filled with dread because I feel like we’ve been forgotten. What are some things most people don’t understand when it comes to the pandemic and its impact on high-risk disabled, chronically ill, and immunocompromised people?
Agreed, it’s so disheartening and invalidating to see disabled people’s perspectives left out. In my role at the Disability Health Research Center, I also conducted a qualitative study on how the COVID-19 pandemic is affecting our community (more on that coming soon!). I don’t think those outside the disability community understand how the pandemic has both created a new set of barriers for us to navigate and exacerbated many existing inequities.
After you graduate, what do you want to do in the future in public health and healthy policy?
I want to continue working on disability health policy in some capacity, whether that is in a government role, working for an elected official, or in a nonprofit.
Sabrina Epstein (she/her/hers) is a disabled health policy advocate graduating Johns Hopkins University in spring of 2021. Currently, she works at the Johns Hopkins Disability Health Research Center, where she conducts COVID-19 research and manages accessible communications. Her past work includes working in the accessibility office at the National Endowment for the Arts, organizing against police violence in Maryland, and presenting at the International Conference on Disability Studies, Arts, and Education. In her free time, she enjoys painting and gluten-free baking.
Learn more about the Disability Health Research Center at https://disabilityhealth.jhu.edu/.
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