The elderly woman on the phone was heartbroken. Her brother, who had Down syndrome, had never lacked a family member at his side in his 60-plus years.
But then he became severely ill with COVID-19, and she’d had to leave him at a local hospital, confused and alone. He died two weeks later.
Now she was calling the Down Syndrome Association of Minnesota to ask if she could help spare other families from the same fate by helping the agency in its efforts to lobby state health officials to prioritize COVID-19 vaccination for adults with Down syndrome.
“He was without his family for the first time in his life at the end of his life,” said Sarah Curfman, the association’s executive director. “She said, ‘I don’t want anyone else to go through that.’”
Recent studies indicate that adults with Down syndrome, specifically those 40 and older, are three to 10 times as likely to die from COVID-19 than the general population. The findings confirmed what many had already suspected – that those with the genetic disorder, already prone to respiratory issues, heart conditions and other risk factors for coronavirus, were more susceptible to the virus’s harmful effects.
A 40-year-old with Down syndrome faces the same COVID-19 risk as a typical 70-year-old, according to the most recent study led by researchers at Emory Universityin Atlantaas part of an international collaboration. The results, researchers and advocates said, indicate the need to prioritize vaccination for individuals with Down syndrome, especially adults.
While the growing body of research helped spur the Centers for Disease Control and Prevention toadd Down syndrome to its list of high-risk groups for priority vaccination in December, advocates said many states still aren’t sufficiently emphasizing the population.
“It’s clear that they should be moved to the front of the line,” said Republican Sen. Bill Ingebrigtsen of Minnesota, lead author of a letter signed by bipartisan state legislators last month imploring health officials to prioritize adults with the condition. “I can’t emphasize enough how dangerous it could be for these individuals if they don’t get the vaccine.”
An earlier study conducted by researchers in the United Kingdom similarly concluded that older adults with Down syndrome were five times as likely to be hospitalized with the virus and 10 times as likely to die as a result.
Such findings stress the importance of prioritizing the population, said Michelle Sie Whitten, president and CEO of the Denver-based Global Down Syndrome Foundation.
“There should be no contest,” said Whitten, adding that caregivers should be vaccinated, as well. “If you’re starting from the highest risk to the lower, trying to mitigate COVID-19 deaths and its horrible repercussions, there’s nobody more worthy than adults with Down syndrome who are 40 and above.”
In late February, Minnesota health officials reset vaccine distribution priority levels to prioritize the state’s roughly 2,000 adults with Down syndrome, who are now eligible for the vaccine once 70% of residents 65 and older have received it – likely in late March. The move followed a campaign led by advocates and parent groups demanding higher priority, capped by Ingebrigtsen’s letter.
“I didn’t think it would be that big a deal to put them in a higher bracket,” for vaccine prioritization, said Ingebrigtsen, whose 61-year-old brother-in-law has Down syndrome and lives with the senator and his wife in the state’s Douglas County. “Our letter might have done that. But it should have been done quicker. It should have been done immediately.”
Priority status for Down syndrome varies from state to state
In the United States, the community of those with Down syndrome, in which people are born with a certain extra chromosome, is relatively small – between 300,000 and 400,000, Whitten estimates. The average lifespan of people with Down syndrome has increased dramatically since the 1980s, a rise the Global Down Syndrome Foundation attributes to the discontinued practice of institutionalizing such individuals.
Many with the condition living in group facilities received the COVID-19 vaccine early on as part of the CDC’s prioritization of residents of nursing homes and congregant situations, but that still left most of the population behind – a situation that roused numerous Down syndrome advocacy groups into action across the country.
In Florida, several local associations banded to conduct a highly publicized effort dubbed #AShotAtTheShot that they credited for helping to convince Gov. Ron DeSantis to give the group high priority as of mid-February.
“We called the governor, we texted, we tweeted – anything we could do to make him aware of the vulnerability,” said Debbie Revels, executive director of the Down Syndrome Association of Jacksonville, whose 34-year-old son, Nick, has Down syndrome. “And now we have received so many emails and calls of gratitude, from people letting us know they’ve made appointments for their loved ones.”
According to the Global Down Syndrome Foundation, at least 29 states now place those withDown syndrome in the CDC’s recommended high priority category for vaccination, based on the foundation’s interpretation of state guidelines.
While the landscape continues to change as advocacy efforts ramp up nationwide, individuals with Down syndrome remain in lower-than-recommended tiers in eight states, according to the association’s last tally. As for the remaining states, the group said guidelines did not definitively cite priority status for those with Down syndrome.
And varying guidelines exist even within states, the association notes: For instance, in Colorado, adults with Down syndrome who have at least one high-risk factor – which most do – qualify for earlier vaccination, but those who don’t would have to waituntil Phase 2; in Louisiana, those aged 55-64 are scheduled with priority, but those 54 and younger remain unaddressed in state guidelines thus far.
“There’s so much state-to-state variability that it can be hard to advise people,” said neurologist Nicole Baumer, director of the Down Syndrome Program at Boston Children’s Hospital and a board member of the Roswell, Georgia-based National Down Syndrome Congress.
In Minnesota, Curfman said disability advocates were shocked to learn at a meeting with health department officials earlier this year that two-thirds of the state’s 3.6 million adults were scheduled for vaccination earlier than those with Down syndrome, reflecting a strategy that she said emphasized work environment over vulnerability.
“If you’re in the bottom third, is that really prioritization?” she said. “That was our campaign – that this needs to be risk-based.”
‘We knew this was going to be a problem’
The primary COVID-19 risk factors faced by individuals with Down syndrome are immunodeficiency issues and conditions associated with premature aging, said Anke Huels, chief author of the Emory University study and assistant professor of epidemiology and environmental health.
“We know they are very vulnerable to respiratory diseases, and they also develop Alzheimer’s and dementia younger than the general population,” Huels said.
Information shared among parent and advocacy networks had already put adult caregivers on edge early in the pandemic.
Moya Peterson, director of the Adults with Down Syndrome Specialty Clinic at University of Kansas Medical Center, said it was clear that “if they got COVID, they got sick, very fast. We knew this was going to be a problem.”
The population contracts pneumonia easily, she said, and is prone to weight issues, heart issues and autoimmune disorders.
The list also includes obstructive sleep apnea, which some studies have linked to a higher risk of COVID-19 and which can be experienced by between 40 to 70% of individuals with Down syndrome, depending on age.
Peterson said states are generally trying to do the best they can, prioritizing teachers and other essential workers. But depending on how that category is defined, those numbers can be very large, which drops individuals such as those with Down syndrome further down the list.
As much as vaccination is about saving lives, caregivers are also eager to restore their loved ones’ social lives. The isolation and altered reality of the pandemic have been especially difficult for a population largely dependent on interaction and learned routines.
“This has upset everything,” Peterson said. “They can’t go to day services or their jobs, or they’re not in the homes they used to be in. They’re tired of Zoom. They’re tired of all of this and want to go back to how it was.”
Caregivers said that in addition to anxiety and depression, people with Down syndrome have suffered physical and intellectual setbacks as a result of COVID-19 lockdowns.
“A lot of parents say they feel there’s been a regression of learning or even behavior and ability,” said Revels, of the Down Syndrome Association of Jacksonville. “Like, ‘My daughter used to be able to tie her own shoes, and now she’s refusing,’ or ‘My adult son was able to put on his mask and go to work one day a week, and now he won’t put his mask on.’”
Revels was among those who kept their loved onesathome as the virus began to spread, temporarily removing her son from the residential community where he lived.
“That was a tough time,” she said. “He worked at a supermarket, where he was in contact with the public. He spent three months isolated from his friends and the life he knew.”
Revels said she and her husband noticed her son talking with himself more as he struggled with the lack of social activity.
“We were very careful,” she said. “He could no longer work out at the gym, so we were watching him regress not only mentally but physically, and that’s never good for adults with Down syndrome.”
With vaccines now on the way, things are looking up.
“He’s scheduled this week for his vaccine, so he’s very excited,” she said. “We’re looking forward to him living life as normal and going back to work.”