In March, the term “underlying condition” was used to reassure healthy Americans about their risk as COVID-19 overwhelmed New York City’s hospitals. Media reports said over and over that underlying health conditions presented an enormous amount of risk for Americans.
Yet, in many states people living with serious underlying conditions are still waiting for COVID-19 vaccines, prioritized below individuals with lower risk. Suddenly, it seems underlying health conditions are considered not high risk enough.
We live with cystic fibrosis (CF), a rare and fatal genetic disease associated with respiratory decline and failure. In 2019, the median age of death for individuals with CF in the United States was 32.4 years old. And that’s under the best of circumstances, not during a pandemic.
When cases of COVID-19 started mounting nationwide, our patient community was quickly urged to stock up on supplies and stay home. Like the millions of Americans with underlying conditions, our goal was to prevent exposure to COVID-19.
More than 30,000 people in the United States have CF. As of mid-January, at least 799 individuals with CF have contracted COVID-19 in the U.S. with almost 15% requiring hospitalization, according to a webinar hosted by the Cystic Fibrosis Foundation. According to preliminary data from the European Cystic Fibrosis Society, the hospitalization rate for confirmed COVID-19 cases in Europe is almost 28%.
The risk for bad outcomes from COVID-19 increasese for CF patients with advanced lung disease, diabetes, or if they have received a double lung transplant.
Clearly, access to COVID-19 vaccines could substantially reduce the risk of severe outcomes from the virus.
Vaccines should go to the vulnerable
We have watched lower risk populations, including hospital employees without direct patient care responsibilities, university faculty able to teach remotely, and “vaccine chasers” receive their shots.
The specific prioritization varies state by state, but people with serious underlying conditions are finding themselves at the back of the line across the country, often because they are younger in age.
In Pennsylvania, people with CF are waiting in line behind smokers and in Maryland, they are waiting behind cannabis growers. In Washington and Michigan, people with CF may have to wait until the spring or summer.
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In some parts of the country, like North Carolina and California, vaccines are being allocated by age rather than risk of serious outcomes, thereby leaving people with life-shortening diseases like CF behind.
Why are people with underlying health conditions who may have substantial risk for bad outcomes from COVID-19 being forced to wait for vaccines?
It is because we are stuck in a high-risk limbo. In some ways, orders to stay at home as much as possible worked, but now they are being used against us.
Because of our condition’s small patient population size and our strict adherence to social distancing guidelines, states don’t have complete information when it comes to the risks we face after contracting COVID-19. Imperfect data should not be used to set policy.
With advanced stage disease, I (Emily) am at particularly high risk. I have not left my house aside from a daily masked and socially distanced walk since March. I have not stepped foot in a grocery store or restaurant, and I have had to convert all of my medical care to telehealth. While telehealth has many benefits, the reality remains that a zoom call with one’s doctors is not a substitute for in-person care, nor is it always possible.
Disability advocates are rightly frustrated with vaccine allocation. CF is not the only condition to be disadvantaged in the rollout. People living with asthma, dementia, hypertension, liver disease, and other rare conditions are also having to wait behind healthy Americans.
Only one of us (Emily) has been able to receive the first dose of a vaccine, while the other (Gunnar) has had no luck so far. We are a microcosm of the frustration our patient community faces in gaining access to vaccines.
Instead, we are told to stay home.
No substitute for vaccination
Now, it is almost as if “staying home” is presented to us as an alternative to vaccination. Chronic conditions often require in-person medical care that put us at high risk for exposure. In addition, people with CF and their family members rely on jobs for rent, food and health insurance just like everyone else that cannot always be done remotely. They also have children that go to school and require child care. Just staying home is simply untenable for many.
Beyond the practical considerations, the suggestion that people with underlying conditions just “stay home” while we wait for later phases of the rollout is a solution steeped in discrimination. Providing vaccinations to lower risk people makes society accessible again for able-bodied people, while those of us with underlying medical conditions and disabilities are tucked away, expected to put our lives on hold, and wait.
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The insistence that we simply stay home denies our worth and value to society and treats us as second class citizens. The effect is a perpetuation of systemic ableism and widening of pre-existing inequity among sick and disabled populations.
Just “staying home” is not a substitute for vaccines.
Highly effective vaccines are finally available. Now the onus is on policy makers to allocate them justly and equitably. That includes providing them to people with serious underlying conditions. This is particularly critical now as new coronavirus variants emerge in the US.
After all, for many of us with serious underlying conditions, a vaccine now versus in a few weeks or months can be the difference between life and death.
Gunnar Esiason, a Master of Business Administration/Master of Public Health candidate at the Tuck School of Business at Dartmouth, lives with cystic fibrosis and is a rare disease patient leader with the Boomer Esiason Foundation. Follow him on Twitter @G17Esiason
Emily Kramer-Golinkoff, a Master of Bioethics, lives with advanced stage cystic fibrosis and is the co-founder of Emily’s Entourage, which promotes research and drug development for Cystic Fibrosis, and a patient advocate and speaker. Follow Emily on Twitter at @emilykg1 and Emily’s Entourage at @EmilysEntourage.