While the growing body of research helped spur the U.S. Centers for Disease Control and Prevention to<\/strong>add Down syndrome to its list of high-risk groups for priority vaccination in December, advocates said\u00a0many states still aren\u2019t sufficiently emphasizing the population.<\/p>\n Starlena Moore administers a COVID-19 vaccine to Jimmy Else, 35, at the offices of YAI in New York City, Dec. 28. 2020. YAI is an agency that provides services to individuals with intellectual and\/or developmental disabilities. (Photo: Seth Harrison, The Journal News)<\/span><\/p>\n \u201cIt\u2019s clear that they should be moved to the front of the line,\u201d 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. \u201cI can\u2019t emphasize enough how dangerous it could be for these individuals if they don\u2019t get the vaccine.\u201d<\/p>\n 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.<\/p>\n Such findings stress the importance of prioritizing the population, said Michelle Sie Whitten, president and CEO of the Denver-based Global Down Syndrome Foundation.<\/p>\n \u201cThere should be no contest,\u201d said Whitten, adding that caregivers should be vaccinated, as well. \u201cIf you\u2019re starting from the highest risk to the lower, trying to mitigate COVID-19 deaths and its horrible repercussions, there\u2019s nobody more worthy than adults with Down syndrome who are 40 and above.\u201d<\/p>\n Down syndrome affects 1 in 700 babies born each year in the United States. (Photo: sturti \/ Getty IImages)<\/span><\/p>\n In late February, Minnesota health officials reset\u00a0vaccine distribution priority levels to prioritize the state’s roughly 2,000 adults with Down syndrome, who are now eligible for the vaccine\u00a0once 70%\u00a0of residents 65 and older have received it \u2013 likely in late March. The move followed a campaign led by advocates and parent groups demanding higher priority, capped by Ingebrigtsen\u2019s letter.\u00a0<\/strong><\/p>\n \u201cI didn\u2019t think it would be that big a deal to put them in a higher bracket,\u201d for vaccine prioritization,\u00a0said Ingebrigtsen, whose 61-year-old brother-in-law has Down syndrome and lives with the senator and his wife in the state\u2019s Douglas County. \u201cOur letter might have done that. But it should have been done quicker. It should have been done immediately.\u201d<\/p>\n 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.<\/p>\n Many with the condition living in group facilities received the COVID-19 vaccine early on as part of the CDC\u2019s prioritization of residents of nursing homes and congregant situations, but that still left most of the population behind \u2013 a situation that roused numerous Down syndrome advocacy groups into action across the country.<\/p>\n Gabriel Fernandez, a registered nurse from Texas Tech University Health Sciences Center El Paso, injects a COVID-19 vaccine into the arm of an Emergence Health Network client with developmental disabilities at the EHN DayHab center in East El Paso on Jan. 7, 2021. (Photo: Aaron E. Martinez, El Paso Times via USA TODAY NETWORK)<\/span><\/p>\n 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.<\/p>\n \u201cWe called the governor, we texted, we tweeted \u2013 anything we could do to make him aware of the vulnerability,\u201d said Debbie Revels, executive director of the Down Syndrome Association of Jacksonville, whose 34-year-old son, Nick, has Down syndrome. \u201cAnd now we have received so many emails and calls of gratitude, from people letting us know they\u2019ve made appointments for their loved ones.\u201d<\/p>\n According to the Global Down Syndrome Foundation, at least 29 states now place those with<\/strong>Down syndrome\u00a0in the CDC\u2019s recommended high priority category\u00a0for vaccination, based on the foundation\u2019s interpretation of state guidelines.<\/p>\n 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\u2019s last tally. As for the remaining states, the group said guidelines did not definitively cite priority status for those with Down syndrome.<\/p>\n Nick Revels, who has Down syndrome, poses for a picture with his mother, Debbie Revels, executive director of the Down Syndrome Association of Jacksonville. The group was among four Florida organizations that waged the #AShotAtTheShot campaign in early 2021 to lobby state health officials to grant COVID-19 vaccination priority to adults with Down syndrome. (Photo: Courtesy of Debbie Revels)<\/span><\/p>\n And varying guidelines\u00a0exist even within states, the association notes: For instance, in Colorado, adults with Down syndrome who have at least one high-risk factor \u2013 which most do \u2013 qualify for earlier vaccination, but those who don\u2019t would have to wait<\/strong>until Phase 2; in Louisiana, those aged 55-64 are scheduled with priority,\u00a0but those 54 and younger remain unaddressed in state guidelines thus far.\u00a0<\/p>\n \u201cThere\u2019s so much state-to-state variability that it can be hard to advise people,\u201d said neurologist Nicole Baumer, director of the Down Syndrome Program at Boston Children\u2019s Hospital and a board member of the Roswell, Georgia-based National Down Syndrome Congress.<\/p>\n In Minnesota, Curfman\u00a0said disability advocates were\u00a0shocked to learn at a meeting with health department officials earlier this year that two-thirds of the state\u2019s 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.<\/p>\n \u201cIf you\u2019re in the bottom third, is that really prioritization?\u201d she said. \u201cThat was our campaign \u2013 that this needs to be risk-based.\u201d<\/p>\n 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.<\/p>\n \u201cWe know they are very vulnerable to respiratory diseases, and they also develop Alzheimer\u2019s and dementia younger than the general population,\u201d Huels said.<\/p>\n Information shared among parent and advocacy networks had already put adult caregivers on edge early in the pandemic.<\/p>\n Moya Peterson, director of the Adults with Down Syndrome Specialty Clinic at University of Kansas Medical Center, said it was clear that \u201cif they got COVID, they got sick, very fast. We knew this was going to be a problem.\u201d<\/p>\n The population contracts pneumonia easily, she said, and is prone to weight issues, heart issues and auto-immune disorders.<\/p>\n 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\u00a070%<\/strong>\u00a0of individuals with Down syndrome, depending on age.<\/p>\n Children with Down syndrome have an extra copy of chromosome 21, the smallest human chromosome. (Photo: Tatiana Dyuvbanova \/ Getty Images)<\/span><\/p>\n 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.<\/p>\n As much as vaccination is about saving lives, caregivers are also eager to restore their loved ones\u2019 social lives. The isolation and altered reality of the pandemic has been especially difficult for a population largely dependent on interaction and learned routines.<\/p>\n \u201cThis has upset everything,\u201d Peterson said. \u201cThey can\u2019t go to day services or their jobs, or they\u2019re not in the homes they used to be in. They\u2019re tired of Zoom. They\u2019re tired of all of this and want to go back to how it was.\u201d<\/p>\n Caregivers said\u00a0that in addition to anxiety and depression, people with Down syndrome have suffered physical and intellectual setbacks as a result of COVID-19 lockdowns.<\/p>\n \u201cA lot of parents say they feel there\u2019s been a regression of learning, or even behavior and ability,\u201d said Revels, of the Down Syndrome Association of Jacksonville. \u201cLike, \u2018My daughter used to be able to tie her own shoes, and now she\u2019s refusing,\u2019 or \u2018My adult son was able to put on his mask and go to work one day a week, and now he won\u2019t put his mask on.\u2019\u201d<\/p>\n![](\"https:\/\/www.gannett-cdn.com\/presto\/2021\/01\/06\/USAT\/e50942c5-3950-49ad-9ba6-9421ecb4fa02-XXX__sh122820covidvaccine001.JPG\")
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<\/p>\nPriority status for Down syndrome varies from state to state<\/h3>\n
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<\/p>\n‘We knew this was going to be a problem’<\/h3>\n
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