For weeks now, Mary McDarby has lived in vaccine limbo.
Her husband qualified for the coronavirus vaccine more than two months ago. Because he has later-stage emphysema, though, his lungs cannot tolerate cold air. Even the short distance between the parking lot and the door of a vaccine clinic could pose a threat.
The other option, bringing the vaccine to him, also has proved impossible. For McDarby, the silence from officials has left her feeling abandoned.
“I thought, there’s gotta be a lot of disabled people in our situation,” she said. “But, I can’t find any information about it.”
Even as she struggles to access a shot, she knows they are lucky. Unlike a lot of disabled people, her husband is at least eligible, and they can afford to stay at home.
“We’re gonna make it through,” she said. “But, I really want him to get this shot.”
For months now, disability advocates in the Berkshires and beyond have pushed the state to open up eligibility to a larger list of comorbidities, make signing up more accessible and creating additional channels for people who are unable to go to one of the large-scale vaccination sites.
In response, vaccine leaders have tweaked the registration process and developed plans to begin at-home inoculations with the newly approved Johnson & Johnson vaccine.
But, most disabled people remain ineligible, and the state’s focus on large-scale public clinics makes the process impenetrable for many who do qualify, says Colin Killick, executive director of the Disability Policy Consortium.
“It’s negligent,” he said. “I can’t come up with any other word for it. We’ve been pleading with the state for months to give our community priority. We’ve shown them the evidence, the fear in the community. We’ve highlighted cases of people at risk. I don’t know what else to do.”
To determine eligibility for people under 65, Massachusetts follows the Centers for Disease Control and Prevention’s guidance, which splits comorbidities into two lists: conditions that are proven to increase a person’s risk of severe illness and death, including pregnancy and Type 2 diabetes, and conditions that “might” increase risk, including Type 1 diabetes, HIV and asthma.
Unlike at least 20 other states, the commonwealth only prioritizes conditions in the proven list. Gov. Charlie Baker added asthma to the list of qualifying conditions in mid-February, but he has not budged since.
“A condition like cystic fibrosis is on the second list,” Killick said. “Which means someone with cystic fibrosis gets no priority at all, even though their lungs are filling with mucus and they’re being hospitalized for inability to breathe, before you even factor COVID in.”
Though studies suggest that people with a wide variety chronic conditions might be more vulnerable to COVID-19, CDC guidelines say the evidence for many of those conditions is limited. Killick pointed out that the rarity of some diseases makes it all but impossible to prove the risk.
“In these messy circumstances, you need a very large sample size to say for certain that a condition would put someone at an increased risk of mortality,” he said.
Last fall, an analysis of nearly half a million insurance claims found that people with intellectual disabilities and developmental disorders were three times more likely to die from COVID-19 compared with others who fell ill. Killick says he has sent that study to state leaders, to no avail.
But, according to two sources with knowledge of the state’s vaccine advisory group, the group expects that the CDC comorbidity list soon might change substantially. Both sources say the state likely would follow the CDC’s lead and widen eligibility.
In the meanwhile, Killick says advocacy groups are “strongly considering” filing a federal complaint against the commonwealth for violating the Americans with Disabilities Act.
For now, many people with disabilities are waiting, either to be eligible or to access the shots that they already qualify for. And waiting can come with high costs.
‘He can’t get the help he needs’
Laura Glover had no idea how she would get her husband, Peter, to a vaccine clinic.
Early in the process, she was shocked to find that several serious illnesses, including a neurological disorder, did not qualify him for the vaccine. It was his weight, instead, and an active cancer diagnosis, that made him eligible.
But, he largely was homebound after a recent amputation, and she knew it would require a Herculean effort to get him to his shot. Still, she could not wait. Fearing a virus exposure, they had not gone to outpatient physical therapy after his amputation.
“Just about everybody involved in his care has said the same thing, ‘You’d be further along without the pandemic,’ ” she recalled. “He’s being slowed up because he can’t get the help he needs.”
Desperate not to delay his recovery further, she secured an appointment and enlisted help to carry him into the car. Alone, it would have been impossible: He weighs more than 300 pounds.
Through a friend of a friend, she got permission to have him vaccinated in the car.
“So, I didn’t have to go through the whole thing again, get him back out into the wheelchair,” she said. “It’s a lot. It’s hard on me.”
Now, dealing with her own knee injury, Glover worries about how to get her husband to his second shot. She says she will not relax until two weeks after that dose, when her husband can get back on track with his recovery.
Peter Glover is far from the only person who has postponed care during the pandemic. Julie Berger, one of the founders of Berkshire Mutual Aid, an effort started by the South County Disability Rights Working Group, pointed out that many disabled people have canceled appointments for a year now, faced with an agonizing choice between risking exposure and suffering the long-term effects of a lack of care.
“People who are dealing with being in the cracks of the medical system on a good day, those are the people who are at risk right now,” Berger said. “Those are the people whose lives have been extremely altered by COVID, by not being able to see specialists all year, with conditions that aren’t necessarily manageable on a good day. Those people are actively in decline.”
The ‘race-to-the-finish’ mentality
Though only a small piece of the puzzle, vaccinations for the homebound could help ease the burden on caregivers like Glover and McDarby.
Vaccine coordinators have said that the hurdles to at-home vaccinations with the Pfizer and Moderna vaccines are too high to clear, but the Johnson & Johnson vaccine long has been expected to change the equation, with its single-dose regimen and less-stringent storage requirements.
In the Berkshires, homebound vaccinations will begin as soon as the county receives a steady supply of those doses.
“Without that, we can’t do much,” said state Rep. William “Smitty” Pignatelli, D-Lenox, who confirmed the policy change. “But, we’re ready to go now, provided we get more consistency about how much and when we’re gonna get vaccines.”
Even the homebound vaccination programs will not catch everyone, though. Killick and Berger fear for people with rare diseases or other chronic conditions who are not homebound but might need to be vaccinated in a clinical setting and monitored for adverse reactions, or who otherwise might be unable or afraid to go to a mass-vaccination site.
Several rare disease organizations, including the Mast Cell Disease Society, have advocated for their patients to be vaccinated in health care settings, rather than public clinics or pharmacies.
“Having vaccines available at major hospitals and giving discretion to the physicians who treat the sickest of patients in our community is essential,” the group wrote.
Some advocates have called for Massachusetts to allow doctor’s offices and visiting nurses to offer the vaccine, which also could increase vaccine uptake among people who are hesitant but trust their primary care physician.
But, advocates say that all of those changes will make no difference if people with disabilities remain ineligible or cannot register. Berger pointed out that people with disabilities often juggle medical care, finances and more, burdens that leave them with little time and bandwidth to battle for limited appointment slots.
“We’re talking about this race-to-the-finish mentality,” Berger said. “If something doesn’t change, most of our disabled citizens will end up at the end of Phase Three.”
The state has failed to pay attention, she says, but there is some hope: Other people seem to be listening.
She calls this moment an “empathy epiphany.” As able-bodied people struggle to secure an appointment, Berger thinks they might be getting a glimpse into how logistical challenges and failures at the state level can threaten a person’s health and well-being.
“The entire state has woken up to the lack of basic access and caring that disabled people deal with on a regular basis,” she said. “It’s terrible, but it’s also for the good that people have seen it.”