Minnesota families fight for COVID-19 vaccine priority for loved ones with Down syndrome

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Leslie Neugent is doing everything she can to make sure he son JJ is healthy, including fighting for him to have priority access to the COVID-19 vaccine.

JJ, a 23-year-old from Wayzata, has Down syndrome. The family has been under a hard lockdown since March in an effort to limit his exposure to the coronavirus.

"We have not been in a grocery store or restaurant," Leslie said. "It has been for all of us, absolutely terrifying."

As demand for the COVID-19 vaccine continues to grow, families across Minnesota worry that their loved ones with Down syndrome and other intellectual disabilities will be forced to wait for nearly two million other people to get the vaccine before they get the shot.

The Down Syndrome Association in Minnesota has asked state leaders to move the vulnerable population into a higher prioritization group, said executive director Sarah Curfman.

"Time is of the essence," she explained.

Curfman said recent research out of the United Kingdom reveals people with Down syndrome who contract COVID-19 are five times more likely to end up in the hospital and 10 times more likely to die from the virus.

The study attributes underlying health conditions and other co-morbidities as a direct link, Curfman said.

"If we’re concerned about the stress on hospital system, we need to be vaccinating those most likely to land in the hospital from the virus," she said.

Curfman shared the study with state leaders in a letter she sent last month, requesting the state health department "move adults with Down syndrome to the front of Phase 1B," because of the underlying risks.

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The concern is that people with disabilities will fall behind others in industries in Phase 1B that are eligible for vaccinations.

"If I am a 35-year-old man with Down syndrome, who works at a grocery store, the fact that I can get vaccinated because of the job I have in the community before I can get vaccinated because of the risk I have with my underlying condition, that’s where we said, ‘hold on,’" Curfman said.

She posted the letter to an online petition, which to date has garnered nearly five thousand signatures.

"We were pushing, and now we are screaming," Curfman said.

Neugent called the vaccine rollout so far "shameful," admonishing state leaders who she says have ignored their calls to action.

"It’s so unfair. It’s gut wrenching."

In a statement to 5 EYEWITNESS NEWS, Minnesota Health Department spokesman Michael Schommer acknowledged the increased demand, saying "There are many Minnesotans who need and deserve the vaccine right now.

"While we are currently vaccinating health care workers, long term care residents, Minnesotans age 65 and older, and teachers, school staff and child care workers, it’s clear more vaccine is needed," the statement reads. "That’s why Governor Walz and Commissioner Malcolm have continued to press the federal government to send more vaccine as quickly as possible and will announce more soon about how more Minnesotans can expect to access vaccine in the coming months."

Neugent hopes those plans will include individuals like her son, JJ.

"You can judge a government by how it treats its most vulnerable and we are failing our most vulnerable right now," she said.