My friend Yenny Garcia has been counting the days until she can get vaccinated against COVID-19.
Yenny has a rare, progressive lung disease known as LAM (lymphangioleiomyomatosis). After losing her disability benefits a few years ago, she can no longer afford medication that slows down her lungs’ deterioration, and her lungs have dropped to 33 percent functionality. When they hit 30 percent, she will need a transplant. For now, she relies on an oxygen concentrator to help her sleep and go on walks.
“Most days I wake up with so much phlegm I can hear the crackle when I lay on my back and when I breathe,” Yenny tells me in a text message. The prospect of contracting COVID-19, with its notorious risk of respiratory distress, is harrowing for people who have trouble breathing on a daily basis.
When will Yenny get vaccinated? Possibly at the same time as any healthy person her age.
That’s not because of the long wait times for appointments, or even because her state, California, has yet to start vaccinating people with underlying conditions. It’s because the CDC doesn’t list her condition as high-risk. As of now, she’s not in any priority group.
As states scramble to roll out their vaccine distribution plans, under immense pressure and still reeling from the Trump administration’s negligence, many are turning to the CDC’s 12 designated high-risk conditions as an easy yardstick for who counts as vulnerable.
States including Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, North Dakota, Texas and Washington have done so already, and it’s likely that others will follow suit, especially as the CDC’s own advisory committee has recommended using those conditions as the basis for its Phase 1c.
The problem is that this list was never meant to be a guideline for vaccine distribution in the first place. Even the CDC doesn’t actually think there are only 12 conditions that make a person high-risk. The agency created the list in March as a “living document” intended to be a resource for people who might need to take extra precautions to avoid contracting the virus, and its Web site states upfront that it “is not exhaustive and only includes conditions with sufficient evidence to draw conclusions.” By the CDC’s own admission, the list “may not include every condition that might increase one’s risk for developing severe illness from COVID-19, such as those for which evidence may be limited (e.g., rare conditions).”
A condition is only listed if enough people have it—and have contracted COVID-19—to populate a large study or a series of smaller studies that strongly associate it with increased risk of severe symptoms. My own underlying condition, Type 1 diabetes, hasn’t reached that threshold, as it makes up less than 5 percent of people with diabetes in the United States and less than 0.5 percent of Americans total. Even though at least one new study and precedent with similar viruses like influenza leave little reason to believe type 1 diabetes is not a risk, many states do not include it in their vaccine eligibility guidelines. And rarer diseases like LAM, which affects three to five women in every million, have even less of a chance of meeting the CDC’s standards of empirical evidence.
It’s easy to see, then, why the list is no model of ethical vaccine distribution. But so far, it’s the only guidance states have to go on, unless they can muster the time and resources to come up with their own. And so, even when all states make the vaccine available to people with underlying conditions, chances are good that Yenny will not be included—nor will countless others whose rare diagnoses don’t produce enough data to make the cut.
That’s to say nothing of the 25 million Americans, or one in 13 people, who have rare, undiagnosed illnesses that would never appear on any list of conditions. Nor does it include people with disabilities that may or may not inherently increase a person’s risk of severe COVID-19 symptoms but could subject them to deadly discrimination should they need to be hospitalized.
The CDC’s list of high-risk conditions does not include, for example, quadriplegia or cerebral palsy, the conditions that led Sarah McSweeney’s doctors to pressure her caregivers to sign a DNR before her death last May. It would not prioritize Michael Hickson, the quadriplegic 46-year-old with an anoxic brain injury who died in hospice after a doctor said he shouldn’t be intubated because he lacked “quality of life.” People with intellectual and developmental disabilities are two to three times as likely to die of COVID-19 but, with the exception of those with Downs syndrome, most are not categorized as high-risk.
What, then, is to be done? Given the profound difficulties the Biden administration faces in overhauling vaccine distribution, many are simply hoping for the fastest, easiest route to vaccination, not the most equitable one. But if we go with fast and easy, then we risk countless preventable deaths of disabled people.
There are some partial solutions. We could give physicians the license to use clinical judgment and determine whether their patients should be prioritized, as Virginia has done. We could expand the CDC’s recommended phases to include people with developmental disabilities, as Maryland and Ohio have done.
But the gravity of these oversights, and the scant attention they have garnered so far, point to a larger problem with both state and federal crisis responses: too often, when lists and guidelines get made, disabled people aren’t in the room. As much as we may hope for the success of a coordinated federal vaccine program, it will take more than efficiency to ensure equity for sick and disabled people in the U.S.
Although President Biden has promised a revamped and accelerated system, so far there is no indication that re-examining the category of underlying conditions is anywhere on his agenda. Notably, there were no disability rights experts on the coronavirus advisory board that oversaw his transition. But disability rights experts—that is, disabled people ourselves, with real connections to disabled communities—must be as much a part of the federal vaccine allocation as clinicians, public health experts, and medical researchers.
The president’s campaign platform made a promise of “full inclusion of people with disabilities in policy development.” There is no better place to start than with pandemic response. Our lives depend on it.