People with Down syndrome are some of the most at-risk to die from COVID-19 because of their predisposition to other diseases, but advocates and families say it has been difficult to get a vaccine.
Recent research from Emory University shows that adults with Down syndrome are four to five times more likely to be hospitalized from the novel coronavirus than the general population and 10 times more likely to die from it.
A 40-year-old adult with the condition faces the same risks as someone without Down syndrome who is 70 years old.
“It’s been really challenging for the families. Really challenging for the self-advocates,” said Michelle Sie Whitten, president and CEO of the Denver-based Global Down Syndrome Foundation.
Whitten, the mother of a daughter with Down syndrome, says the biggest problem families are facing right now is clarity. Some states do not mention when people with Down Syndrome will get their vaccine in advance, which has made it difficult for families with Down Syndrome to navigate how to get one.
Twenty-nine states have placed those with Down syndrome in the CDC’s recommended high-priority category for vaccinations, according to interpretations of state regulations by the Global Down Syndrome Foundation.
“There’s not a lot of resources out there for people with Down syndrome,” said Yadira Carrillo, the mother of a daughter who also has Down Syndrome.
Carrillo’s 25-year-old daughter, also named Yadira, contracted COVID-19 in November and spent nearly a week in the hospital when the virus caused her to develop pneumonia.
“It was the worst thing a parent could go through. To see your child that’s in the hospital,” she said.
Living in Colorado, however, she was able to sign Yadira up for a vaccine sooner than she anticipated, so she was able to get her first vaccination shot last week.
“Arizona varies [its vaccine priority] by county for example,” said Sie Whitten. “Rhode Island doesn’t put the phases out [online], Florida doesn’t put the phases out, Idaho doesn’t put the phases out.”
Take Minnesota for example. In a meeting with health department officials, advocates learned two-thirds of the state’s 3.6 million adults were scheduled for vaccinations earlier than those with Down Syndrome.