WASHINGTON – The one reassurance that came in the 42 days Lauren Cooper watched her 17-year-old daughter, Molly, lay in a hospital bed, fighting pneumonia, was that the nurses around her were getting their first doses of the coronavirus vaccine.
Finally, the shot was available in D.C., she thought. Finally, her daughter, who has chronic lung disease and a neurological disorder, might soon have some defense against a virus that is much more likely to kill her than others her age.
“I thought for sure they would open it up to people like Molly,” Cooper says. “Everyone said that to me. ‘Molly will be first. You guys should be excited that Molly will be first.’ ”
But Molly wasn’t first. Or second. Or anywhere near the front of the line for a vaccine, even though one was approved for those 16 and up.
On Inauguration Day, while the rest of the world was focused on a different part of the city, Cooper watched her daughter leave a hospital in Northwest Washington, on oxygen, without having received the shot.
Then, in the weeks that followed, she saw the teenager, along with other young people with chronic conditions, fall from priority group 1b to group 1c.
And now, she has no idea when Molly’s chance to get the shot might come.
“It just seems like there is no timeline or plan,” Cooper says through tears when we talk on a recent evening. “It just seems, like in everything else, disabled people are not valued. Kids like Molly are not valued. They are always put last. And I feel like her life is so valuable. We love her so much.”
Molly has Rett Syndrome, which has left her experiencing seizures and unable to talk or walk. But she also has, her mom says, “the biggest, brightest smile,” a school she attends, and two younger siblings who dote on and worry about her.
“I know they say kids get sick and they have it mild,” Cooper says, “but Molly is not like that.”
The long wait for the vaccine has left many people across the country feeling anxious, desperate even. But for the young and disabled, and for the people who care about them, the realization of where they fall on priority lists has also left them feeling disregarded and discarded.
They don’t want to displace others who are vulnerable, but they describe encountering state health department websites that aren’t accessible for everyone, frustrating wait times that differ from one state to the next for the same medical conditions and few alternatives for people who are homebound or have limited mobility.
They also describe situations that make little sense from a public health perspective. If Molly were to contract the virus, her family has no doubt she would require hospitalization, and probably for a long period of time.
In the past week, I have spoken to people throughout the Washington region who are high risk but don’t hit the age benchmarks that would have placed them among the first groups eligible for vaccination. The waits they describe range from illogical to heartbreaking.
Sabrina Epstein, a senior at Johns Hopkins University, says she realized just how fractured the country’s approach was to inoculating people with disabilities when she registered her grandfather for the vaccine in Texas. She discovered that her rare chronic condition qualified her for the vaccine in that state, but she was still not eligible to receive it in Maryland, where she lives. She then started looking into what other states were doing.
That’s when she realized, she says, “this was a much bigger issue.”
A few weeks ago, Epstein approached Bonnielin Swenor, director of the Johns Hopkins Disability Health Research Center, with the idea of creating an online tracker that would show where each state stood in getting the vaccine to people with disabilities. Swenor recalls her reaction: “This is a phenomenal idea. Let’s do this. I’m all in.”
On Monday, the two, along with a team of people who have been manually inputting data, launched the disability dashboard. And on Tuesday, the National Council on Disability cited their findings in a letter to New York Democratic Gov. Andrew Cuomo, who chairs the National Governors Association.
“While we recognize that in virtually all states the number of vaccines is limited, decisions as to who receives the vaccinations first must consider the most vulnerable in the disability community, as a matter of equity,” the letter reads.
It points out that despite recommendation from public health officials that “persons of all ages with comorbid and underlying conditions that put them at significantly higher risk” be included in the early phases of vaccine distribution, 29 states and D.C. “have all de-prioritized persons with disabilities that fall into that category, including those with developmental disabilities.”
“De-prioritzed” is one way to put it.
“I look at the city’s choice and see that if you’re disabled and young, you’re seen as lesser, disposable,” are the words Anna Landre chose to use during a recent D.C. Council vaccine distribution roundtable.
The 22-year-old immunocompromised wheelchair user on the Advisory Neighborhood Commission for the Georgetown area talked about how her aides, simply because they work with her, had received the vaccine, but she was still waiting. She described feeling “more at risk than ever,” because she had noticed those caretakers behaving more recklessly, with two recently coming in contact with people who tested positive for the virus.
“In vaccinating disability care workers but not those they care for, we must ask: Who are we trying to protect from who, here? Whose lives are we valuing?” she said. “These questions are especially important to ask given the nature of disability as a cause and consequence of poverty and an identity which disproportionately applies to Black and Brown residents of our city.”
A week and a half after the roundtable, Landre finally got the vaccine, but not because of any effort by the city. She got it by chance, because her local Safeway happened to have extra doses left over at the end of the day. She described that luck as making her “even more angry about vulnerable people who don’t have access to doses when distribution is sometimes so arbitrary.”
Ola Ojewumi, a 30-year-old Maryland resident who founded a nonprofit that distributes college scholarships to students with disabilities, can’t even hope to get one of those leftover pharmacy doses. She doesn’t go to the store anymore.
“I can’t go anywhere,” she says. “My life is relegated to the four walls of my home. Even going to the doctor is risky.”
At 11, she received a heart and kidney transplant, and she continues to take immunosuppressant medication to keep her body from rejecting those organs. In December, she contracted the coronavirus, and she says her doctors fear what will happen if she gets it again.
She says she has no idea when her turn for the vaccine will come. She only knows that right now, she doesn’t qualify.
“It’s frustrating to watch people with disabilities who are the most at risk, the most susceptible, having to wait months and months,” Ojewumi says. “I feel devalued. I feel frustrated. I feel people view people with disabilities’ lives as expendable, as if it’s OK if we perish. Our lives are worth living, and saving.”
Every person I spoke to about the issue said the same thing: They understand the supply is limited and that difficult choices must be made. They aren’t trying to bump anyone out of line. They are just trying to get their rightful place in it.
They are just trying to get officials to create a more equitable system that doesn’t ignore the vulnerability of a 17-year-old who has been intubated more times than most people her age.
Or a 30-year-old who has to take medication to keep her body from rejecting her heart.
Or a 47-year-old professor who is terrified of leaving three elementary-school-aged children without a mom.
“If I die, who do my kids have?” says Kirstin Leighton-Lucas, crying quietly. Leighton-Lucas, whose children are 5, 7 and 9, takes an antibiotic three times a week because she has bronchiectasis, a lung condition that makes her susceptible to pneumonia. She also has a herniated disc in her neck that she was supposed to receive surgery for in March but had to postpone. That has left her both vulnerable and in pain for the past year.
During much of our conversation, she jokes about pandemic parenting and what her doctors have told her and how she will probably get a text from some other state telling her she’s eligible for the shot before she gets one from D.C. But in other moments, she shares her quiet fears about the virus, such as “dying alone, because I know I will have to go to the hospital.”
“I think the hardest days are when I’m sleepless at night leading into the day, because I’m thinking, ‘When am I going to get a shot? When am I going to have surgery? When can I help my husband more?’ ” she says. “I think about the pain. I think about the kids.”