Left Behind: Chronically ill but still ineligible for vaccine

It’s been one of the few certainties I’ve allowed myself this past year as a disabled, chronically ill person: I definitely thought I would be somewhere near the front of the line as COVID-19 vaccinations got underway. At least until California’s distribution guidelines changed. The state’s move to a purely age-based system in January for the vaccine rollout came as a crushing blow.

In 2018, at the age of 22, I was diagnosed with pan-ulcerative colitis. A type of inflammatory bowel disease, it’s incurable, disabling and devastating. The symptoms are pretty awful to live with, and come with an increased risk of colorectal cancer and other complications down the line. In short, it’s treatable, but the prognosis varies for each case.

My diagnosis was a life-changing disruption. I was formerly in fair health. In no time at all, I had become terribly sick, and was faced with a harsh new reality. Suddenly, I was in need of assistance in everyday life, heavily relying on my mother as a caregiver and major source of support. I accommodated myself to the disease as best as I could, while medication helped me achieve stability. I maintained my remission for the most part of the last two years. However, in mid-2020, my medication stopped working and my disease flared up violently. Not an ideal situation, even less so in the middle of a pandemic.

I also found myself unemployed thanks to the devastated economy, and hunkered down with my 66-year-old mother in the home we share. We’re both considered high-risk for severe COVID-19, and we’ve done our best (and more) to follow safety guidelines, thoroughly isolating ourselves from the outside world. Unfortunately, when I lost my Covered California health insurance and was switched to Medi-Cal, California’s Medicaid program, my trusted health care providers suddenly became out-of-network. With my disease out of control, this meant paying steep out-of-pocket costs to continue receiving care from my gastroenterologist. I wasn’t able to cope with the stress of searching for a new doctor, and there were few specialists who accepted Medicaid in my area.

My gastroenterologist was determined to keep me out of the hospital, so he put me on three rounds of steroids over the course of about half a year to keep my symptoms at bay. We met via virtual appointments to discuss upgrading my treatment plan. Since basic anti-inflammatory medications for my disease no longer work for me, we’re taking on a more aggressive approach. Namely, Humira, an injectable immunosuppressive drug. While this drug should vastly improve my symptoms, it will also weaken my immune system and make me more vulnerable to infection. This lowered immune response will increase my risk of contracting COVID-19, as well as many other prevalent illnesses. My survival odds will suffer as a result.

I’m now left at the mercy of the California’s latest vaccine rollout plan. The state has announced that residents 16 to 64 with severe conditions will be eligible for vaccines starting March 15. At this time, it seems that IBD is not considered severe enough to warrant priority. I’m not sure when I will become eligible. 

Though my disabilities aren’t visible or obvious to most people I encounter, they are serious and they do jeopardize my health. Being high-risk is not restricted to a select few qualifications, such as diabetes or hypertension, nor does it require a person to look a certain way. Oftentimes, the people who fall into the high-risk category are overlooked and neglected by the world in general.

Unhoused persons, the chronically ill and disabled, immunocompromised people, communities of color, and many otherwise endangered groups are all negatively affected by an age-based vaccine rollout that only includes a few narrow categories of people with disabilities and severe disease for the foreseeable future.

While the vaccine rollout has rightfully sought to take care of the older population, the emphasis on age-based priority system has left many of us anxiously awaiting relief from the daily fear we’ve lived in for the past year. Our lives remain on hold, our fears undiminished.