WEYMOUTH — Since the pandemic began, Monica Jennings’s world, already small, has gotten smaller. Friends no longer visit. Family doesn’t come. She spends her days confined within the purple walls of her bedroom — watching anime, reading fantasy novels, and dabbling in online fanfiction.
“I can’t go anywhere,” Jennings said, sprawled across her bed, her MacBook propped on her lap, “without going to the hospital.”
Jennings, 26, has 22q11.2 deletion syndrome, a genetic disorder caused by a tiny missing piece of her 22nd chromosome. Her health challenges are complex: Jennings has an immune deficiency, bronchiolitis, and is on the autism spectrum. An oxygen concentrator helps her breathe while she sleeps. A feeding pump delivers formula to her belly. She struggles to wear a face mask because, as she said, “my lungs make it harder for me than most people.”
And yet, under Massachusetts’ rules dictating who is eligible for early access to the COVID-19 vaccine, Jennings doesn’t qualify. After seniors 75 and older, next in line for inoculations are individuals 65 and older and those with two or more medical conditions that put them at increased risk of serious illness from the coronavirus. Those dozen conditions, listed by the Centers for Disease Control and Prevention, include cancer, chronic kidney disease, heart conditions, Down syndrome, and obesity. Smokers also are on the list, as are pregnant people.
In terms of early vaccine eligibility, Jennings has all the wrong diagnoses. Her mother and primary caregiver in Weymouth, Lisa Jennings, is baffled.
“It’s confusing, it’s frustrating, and if you really want to vaccinate everybody, why do you want to pit people against each other?” Lisa Jennings said.
Disability rights advocates have been pleading with Massachusetts officials for weeks to revise the state’s vaccine allocation plan and expand priority to more people with underlying conditions. Relying solely on the CDC’s list, they say, unfairly disadvantages people with rare diseases like cystic fibrosis, for which data on COVID sufferers is limited. Even the CDC notes its list of comorbidities known to raise the risk of severe COVID complications is “not exhaustive and only includes conditions with sufficient evidence to draw conclusions.”
The CDC also maintains a separate list of conditions that “might” increase a person’s risk of serious illness from the virus — moderate-to-severe asthma, cystic fibrosis, and immune deficiencies are among them — but Massachusetts, unlike some states, has opted to leave those out of its eligibility criteria.
“If we want to protect a broad group of individuals with comorbidities here in Massachusetts, and people whose risk of severe illness and death we know to be higher — including people with disabilities and communities of color — relying only on the narrow CDC list is not going to get that done,” said Kathryn Rucker, an attorney at the Center for Public Representation, a public-interest law firm for people with disabilities.
This week, the chief policy and advocacy officer of the Cystic Fibrosis Foundation, Mary Dwight, wrote a letter to Health and Human Services Secretary Marylou Sudders, urging the state to give people with cystic fibrosis early access to the vaccines. Attorney General Maura Healey and US Representative Ayanna Pressley also have called on Governor Charlie Baker to add asthma to the state’s list of qualifying comorbidities as a way to reach a vulnerable population and address racial and ethnic inequities plaguing the rollout. Research shows Black patients are more likely to suffer from asthma than white patients. The condition also is more prevalent in low-income, predominantly Black and Latino communities, like Chelsea, that have been hit hard by the virus.
“The most effective way to save lives is to make sure that our most vulnerable residents have access to the vaccine,” Healey said in a statement to the Globe Thursday about expanding the state’s eligibility criteria to cover more health conditions. “The Baker Administration should prioritize these concerns and make the vaccine accessible for everyone who is eligible.”
In a statement to the Globe, a spokeswoman for the state’s COVID-19 response said its eligibility list was based on recommendations by the CDC and the governor’s vaccine advisory group.
The CDC has recommended prioritizing people with high-risk conditions for vaccine access following health care personnel, residents of long-term care facilities, people 75 and older, and front-line essential workers. But this guidance is nonbinding, and states have some latitude in deciding who to offer the doses to first. As a result, prioritization of people with disabilities and chronic illnesses varies across the country.
In New York, for instance, people with any one of the conditions from both CDC lists will be eligible to receive an inoculation starting Feb. 15. New York also supplemented its criteria to include not only individuals with Down syndrome, but all people with intellectual and developmental disabilities, who, according to a recent study, are two to three times more likely to die from COVID-19, compared with other patients.
New Hampshire has begun offering shots to residents who have two or more of the conditions enumerated by the CDC. But officials also are allowing medical providers to use their discretion to vaccinate any patient they believe is at increased risk due to comorbidities, even those not listed by the state or CDC.
“Some disabilities, like Down syndrome, have been studied more extensively, while others have not,” said Dr. Kara Ayers, director of the Center for Dignity in Healthcare for People with Disabilities, in an e-mail, about the exclusion of other disabilities from the CDC lists. “This has caused inequities even within the disability community because some people are included and others are entirely left out of vaccine allocation plans.”
Colin Killick, executive director of the Malden-based Disability Policy Consortium, said the Massachusetts plan seems to punish people with disabilities who have fought for decades for the right to live as independently as possible. State officials prioritized people with disabilities who live in nursing facilities and group homes in the first phase of the rollout, but those with identical conditions living in the community have been left out.
“People with disabilities are not just at risk in this pandemic to the extent they live in congregate settings,” Killick said. Their risks are heightened as they often rely on a rotating crew of caregivers. They also may struggle with compliance with health protocols, like mask-wearing and social-distancing. People with intellectual disabilities, in particular, Killick added, have a history of receiving substandard medical care.
The state is not requiring people to provide proof that they meet the comorbidity requirements for vaccination. Instead, vaccine recipients must complete a self-attestation form confirming their eligibility. Killick said he is not advising people with disabilities to “fudge” the form if they want earlier access, but he wouldn’t blame them if they did.
“I want the system to work,” he said, “but would I blame someone, ethically, for filling it out, if they actually have a condition that puts them at gravely increased risk of death and the state standard does not take their increased risk into account? I can’t say I would.”
Crystal Evans, 39, also is ineligible for earlier vaccine access, despite her numerous medical challenges, including a neuromuscular disease that keeps her connected to a ventilator, which is hoisted to her wheelchair in a backpack. Evans lives in Braintree with her daughter, Sophie, in a home that she has specially modified to accommodate her. A revolving door of therapists, nurses, and personal care attendants come in and out every week. Only her weight, Evans mused, would allow her to be vaccinated at the end of Phase 2, ahead of the rest of the population.
Maybe, Evans quipped, she should take up smoking.
“But I don’t even know what end of a cigarette to light,” she said, chuckling quietly. “I don’t know how to smoke through a tracheostomy.”