by Beth Fox, MPH
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One year ago, I, like many other disabled or chronically ill individuals, began a strict home isolation protocol. I have not had physical contact with anyone who wasn’t a medical provider, or left home for anything but medical appointments, since March 2020. I get food, groceries, and medications through contact-free delivery and sanitize everything that comes into my home. I take these precautions because I have hypogammaglobulinemia, a rare immunodeficiency that limits my body’s ability to produce the antibodies that prevent and fight infection, and a neuromuscular disorder that has caused chronic respiratory failure, forcing me to rely on a ventilator. These factors combined mean that I have a high probability of contracting Covid-19 if I’m exposed to the virus and an exceedingly high chance of developing severe complications or dying from that infection.
I was greatly excited when I saw how quickly vaccine development was proceeding last year and ecstatic when I read the clinical trial reports, which showed that scientific rigor was not sacrificed to obtain that speed. When the FDA granted emergency-use authorization, I eagerly began checking to see when my state, Virginia, would allow me to be vaccinated. I waited patiently while medical providers and residents of nursing or group homes got vaccinated. These groups had far more exposure risk than I do and likely frequently interacted with high-risk individuals or were themselves high-risk. It made sense for them to be prioritized over someone like me who can still care for myself and live relatively independently.
In Virginia, phase 1b was slated to include an array of essential workers, everyone age 65 and over, and individuals ages 16 to 64 living with one or more of the risk factors identified by the CDC. In my area, our local health department is coordinating vaccine appointments for those whose jobs make them eligible, and high-risk patients are being vaccinated by their primary care providers. Initially, this seemed like a good alternative to the complicated online sign-ups that other regions were using that were reportedly difficult to navigate, particularly for older individuals or those with intellectual disabilities. I reached out to my provider who agreed that I should be vaccinated as soon as possible. She explained that her office already had a supply of vaccines and would schedule a clinic period dedicated to administering them to high-risk patients once our area moved to phase 1b and that I should be in the first group scheduled. However, the network of providers she belongs to then decided that they were going to arbitrarily prioritize elderly patients, so the vaccine supply my doctor had was given to a provider who had more patients over the age of 75. The network then distributed the incoming vaccine supply to providers based on how many patients in this age group they see. This meant that my provider, who primarily sees young adults, was left with no way to vaccinate her high-risk patients.
The big problem with this system is that it is arbitrarily elevating one risk factor above all others. While vaccine supply is steadily increasing, current supplies are still severely restricted. This is why it is so important that doses are going to those with the highest cumulative risk. In order to do this, all risk factors need to be considered, and those of us with the highest risk should be prioritized.
Don’t get me wrong, age is certainly a risk factor, but it is only one of multiple known risk factors. I’m not opposed to an 80-year-old with lung and heart disease getting vaccinated before me, nor am I opposed to an otherwise healthy 65-year-old getting vaccinated before a healthy 30-year-old. In both of these scenarios, the person with the greatest cumulative risk is being prioritized.
However, all over our nation, we are seeing individuals for whom age is their only risk factor being prioritized over younger adults,age 64 and under, whose chronic illnesses put them at greater risk for severe COVID-19 complications. This is no different than basing eligibility on any other risk factor. If the state decided it was going to prioritize diabetics or cancer patients, then anyone without that particular risk factor would be forced to wait. Prioritizing select risk factors is dangerous and can prevent those who need the vaccine the most from having access to it.
I’m very fortunate because my provider refused to accept no as an answer for her patients, and she went to bat for us. For over a month, she and I regularly communicated about the vaccine. I was told to fill out an online form, so I could be added to the waitlist. However, that form had no way for me to indicate any risk factor other than age. My provider was able to get me added to the list manually and was told I’d get a call that week to schedule my appointment. I was told that I would probably have to be vaccinated at a different practice by a provider who sees more older patients. Weeks passed with no call. Every time my provider followed up for me, we were told the same thing, that I’d get a call that week. Finally, I got that call and received my first dose of the Pfizer vaccine on March 4th from my provider, who was able to monitor me afterwards for any signs of an adverse reaction. In total, I had to wait over a month beyond the date that my state said I was eligible because those organizing vaccine distribution in my area decided to arbitrarily elevate a single risk factor. If I didn’t have a provider who was such an active advocate, I’d likely still be waiting.
This problem is not unique to my location in central Virginia. I have friends across the country who have had to fight to be able to access the vaccine because their state didn’t recognize their risk. Like many individuals with disabilities, Andrea Klein, who lives in Tennessee, is unable to live independently. According to her state, those who are unable to live independently due to a disability were eligible under the first phase of vaccinations. However, she was repeatedly told that she was not eligible because she didn’t live in a group home, was able to work, and wasn’t on Social Security or Medicaid. She was able to successfully advocate for herself through contacting her health department and state senator, and her full experience is described on her blog. Like many of us, she has been discouraged to find that those who “are at risk for severe outcomes if they contract COVID-19 aren’t closer to the top of the vaccination priority lists. At the very least, anyone who is immune compromised or lives with a condition that affects their breathing and/or coughing strength such as those with neuromuscular conditions and spinal cord injuries shouldn’t have to fight for access to these vaccines” (personal correspondence).
Unfortunately, others have had much less success with advocacy. A friend living in Louisiana is concerned for her family because, in addition to herself and her middle child having asthma, her husband and oldest child are immunocompromised (personal correspondence). Despite having four high-risk family members and having contacted both the state health department and governor, she and her husband are not yet eligible for the vaccine in their state because they are young and the current vaccine phases have only included those 65 years old or over and select essential employees. As of March 9, 2021, Louisiana has added those individuals ages 16 to 64 with one or more COVID-19 risk factors to the list of eligible recipients. However, these individuals were forced to wait during the highest peak of the pandemic and may still experience problems at the local level.
Similarly, Sarah Terzo has had to wait for New Jersey to recognize the risk she faces as a young adult with disabilities. Sarah has rheumatoid arthritis and relies on immunosuppressant medications. While her state was actively vaccinating older adults and smokers, people like Sarah were being overlooked despite multiple studies that had shown “that people with [her] condition are at much higher risk of dying from COVID or of suffering from severe and long-lasting complications, such as heart damage. One study found a fatality rate of 19%, or one in five, making [her] almost 20x more likely to die than a healthy young person, and more likely to die than a 75 year old (personal correspondence).”
The online platform to register for vaccination had no way to indicate that someone was immunocompromised unless it was from an organ transplantation. Sarah contacted her governor and state representatives, and even mobilized friends on social media to do likewise, but got no response from them. In the meantime, Sarah has multiple health problems that are going untreated because she is not willing to risk exposure to possible COVID-19 patients at healthcare facilities that are not following proper infection control recommendations. Like many of us at high-risk for COVID-19 complications, Sarah has isolated herself as much as possible, but she still has some medical appointments that can’t be delayed or facilitated through telemedicine. When asked what concerns she had about the delayed access to the vaccine, Sarah responded, “I am afraid I'm not going to live to see my next birthday. The stress of worrying about COVID is worsening my mental health as well, and exacerbating my bipolar disorder. This would be alleviated if I could get a vaccine.”
These gaps in vaccine distribution are clear examples of covert ableism. This is discrimination against those with disabilities that occurs under the table because of societal expectations or policies. If vaccine distribution was being limited by race or gender, people would be outraged and rightly so. While the covert discrimation that we with disabilities often face can be harder to recognize, it is no less deadly. When access to a tool to prevent a life-threatening disease is based on age, ability to navigate a convoluted bureaucracy, or any factor other than an individual's risk of contracting, spreading, or dying from that disease, the system is broken. People with disabilities have been disproportionately affected by this pandemic since the beginning and we deserve access to the vaccine as much as anyone else. We are not asking to cut in line; we are asking to be allowed in the line.
If you agree that we need to improve vaccine access for young adults with disabilities but wonder what you can do as an able-bodied individual, here are five action steps for you to take.
Get vaccinated if you are eligible! This may seem counterintuitive after this article about how those with higher risk don’t have access. Unfortunately, the way the system is currently set up, if you refuse a vaccine when it is offered to you, it may end up in the trash rather than someone else’s arm. Additionally, the currently available data suggest that getting vaccinated decreases your chance of spreading the virus to others.
Stay home when you can and wear a mask when you go out. As mentioned above, it is impossible for any of us to totally isolate. Wearing a mask drastically reduces your chance of unknowingly spreading the virus to a high-risk individual directly or to someone who will then pass it on to someone who is high risk. Even if your state has lifted mandates or you’ve recovered from a COVID-19 infection, keep wearing the mask for now. This precaution won’t last forever, but right now it is one of the best ways any of us can protect the vulnerable. This will mean that those at high risk for COVID-19 won’t have to wait as long before being able to visit your church, school, or business.
Check your state eligibility requirements. Visit your state’s health department website and find out if those under age 65 with COVID-19 risk factors are currently eligible for vaccination. This may take some digging to get a clear answer, but your state should have a page like those cited above for Virginia and Louisiana that lists who is currently eligible for the COVID-19 vaccines.
Help us advocate. If your state eligibility doesn’t include high-risk individuals under age 65, start reaching out to your representatives, governor, and state health officials. If they are eligible, contact your local health department and ask them what high-risk individuals have to do in order to get vaccinated. If the answer isn’t just to call and make an appointment, then start reaching out to your state and local representatives and health officials advocating to get it changed.
Check on your disabled friends. Many of us have been in isolation for a full year as of this month. It has been a long, exhausting, terrifying, and lonely year. Additionally, some of us will have to continue some degree of isolation even after getting vaccinated, such as those with certain immunodeficiencies that limit the effectiveness of vaccines or those living with high-risk individuals who can’t be vaccinated, like a disabled child. Personally, this isolation has felt so much worse as some parts of life start to return to normal for my healthy peers. We need to continue connecting with people virtually and see that people care enough about us to make sacrifices, like wearing a mask. You can offer a video call or a grocery delivery. You could even offer to help find available vaccine appointments. We need to know that we are not in this fight alone.