‘THE RUG HAS BEEN PULLED OUT’
Vaccine timeline changes affect CT residents with Down syndrome
Prior to the pandemic, Nick Glomb was working at the Big Y in Manchester. He was plugging away at preparations for his long-held dream of starting a hot dog business. He felt he could see members of his family who don’t live with him more often.
But like many, that reality changed when the COVID-19 pandemic hit last March. He left work, the hot dog cart is in storage and he hasn’t been able to visit much with his extended family.
Then came last week, when Gov. Ned Lamont announced a new eligibility plan for COVID vaccinations that was based on age and prioritized school and child care workers.
The plan meant the 32year-old Glomb, who has Down syndrome, would be waiting longer than expected for a dose.
“Waiting to get COVID shots is like being in a cage,” he said.
And for those with severe underlying conditions, it’s more than waiting. According to the Centers for Disease Control and Prevention, people who have conditions such as Down syndrome, cancer, certain heart conditions and several others “are at increased risk of severe illness from the virus that causes COVID-19.”
State officials had previously planned to prioritize those with high-risk medical conditions and essential workers. Referencing a CDC list, Lamont said Feb. 16 — the week prior to his announcement of the new plan — that he thought the state would “start with that as a template” in terms of which conditions would qualify.
But the plan that came out six days later meant Glomb — and others with underlying medical conditions — would not be eligible this month unless they qualified by age or work status. In Glomb’s case, he will not be eligible until May.
“For him to step out the door or for me to have anybody here is a real risk to him,” said his mother, Laura Glomb. “It’s not like, you work in a grocery store, you’re an 18-year-old kid, you’re considered a frontline worker, they’re annoyed, they’re not getting their shots. It’s a little bit different if you have active cancer, or you have something like Down syndrome, where literally, he is at a greater risk.”
High risks
Researchers have estimated a 10 times greater “increased risk for COVID-19–related death in persons with Down syndrome,” as well as a four times greater likelihood that a person with Down syndrome would need to be hospitalized after contracting COVID-19, according to a letter published last year.
Published in the Annals of Internal Medicine in October 2020, the letter examined data from the United Kingdom of adults over 19.
Joaquín Espinosa, executive director of the Linda Crnic Institute for Down Syndrome at the University of Colorado School of Medicine, said “there are aspects of the immune system that are supercharged, hyperactive” in people who have Down syndrome.
“Specifically, the antiviral response within the immune system, what is called the interferon response, it’s the branch of the immune system that fights off viruses that is more active in individuals with Down syndrome all the time, and then when they are challenged with a virus, they super respond, they overdo it,” he said.
That response can cause problems, he said.
“The immune system can be very toxic, can be very harmful when it’s out of control,” he said, including for those who don’t have Down syndrome.
Age is also “a risk factor,” Espinosa said.
"But the impact is much accelerated much earlier in people with Down syndrome, actually by 40 years or so,” he said.
“In other words, we should treat people with Down syndrome in their 40s or so as if they were typical people in their 80s,” he said. “So if we give priority to vaccination to those that are 80 and older, well, in the case of those with Down syndrome, it should be 40 and older.”
Waiting to be eligible
Rocky Hill residents Jane and David Holschlag were disappointed when they heard about the new vaccine eligibility schedule. Their son, Matthew, has Down syndrome in addition to a variety of other conditions, including lung disease and a seizure disorder, Jane Holschlag said.
“If he caught it, the chances are he would die,” she said.
Jane Holschlag said her son has needed to go to the emergency room when he’s contracted a cold in the past because he had difficulty breathing. They’ve been nervous to have people around, or even to go buy groceries.
“It just made sense initially to focus the vaccinations first on people who would be most adversely affected by it,” David Holschlag said.
That’s what happened with older residents in the state, Jane Holschlag pointed out.
“Why are people, young, healthy people in schools and babysitters that are in their 20s and have no medical problems getting it before him?” she said. “It makes no sense at all.”
Jane Holschlag said her son returned to a day program a few months ago. She said it makes her son happy, but she’s also “frightened to death every day” that he’ll contract the coronavirus. She said he doesn’t understand the need to wear a mask or keep his hands off his face.
Since Matthew is 38, he would become eligible for the vaccine April 12. But even some of those who became eligible to register this week were not able to find an appointment until May. So Jane Holschlag knows her son could be waiting for a while.
“I guess we really believe that you can judge any society by how well it takes care of those who cannot take care of themselves at all,” David Holschlag said. “And he’s one of those that falls in that category, there are a lot of people like that I know. It just seems like we should be focusing on those who would be most seriously affected first.”
Dr. Judith Mascolo, a West Hartford resident, said her daughter will now have to wait months before she’s eligible for a COVID-19 vaccine.
“So many of us, as parents of children with disabilities, are very disappointed and upset about this decision,” she said.
Christina Anne Le, one of her daughters, is 20 and has Down syndrome, but will not be eligible to register until early May.
Mascolo said her daughter having to wait for the vaccine “keeps her more iso-lated,” but she’s been pleased with the low number of COVID cases in Le’s post-secondary program in West Hartford Public Schools. As of Monday, there were none recorded for the post-secondary programs on the school system’s tracker.
As a doctor, Mascolo also has patients with underlying medical conditions who are now waiting longer than expected for the vaccine.
“Every doctor is probably frustrated by this, every doctor in the community. Because we’ve been telling our patients, ‘Just a few more weeks, just after all the health care providers and the elderly people have been vaccinated, it will be your turn,’” she said. “And the rug has been pulled out from all of us.”
‘I’d rather give my shot to my kid’
Lamont and his administration has defended the new plan, saying the agebased approach is the most efficient way to get the most people vaccinated.
Shanon McCormick, executive director of the Down Syndrome Association of Connecticut, agreed that efficiency was a good quality.
“But we also need to consider equity, because government isn’t business,” she said. “Sometimes equity, which is really the higher value in some cases, is just, it’s not efficient.”
McCormick said she has heard from people who are concerned about family members with underlying medical conditions.
She said the state’s new plan “was really the wrong way to go,” and called it “discriminatory.” Another group, Disability Rights Connecticut, has alleged discrimination in a federal complaint filed last week.
Max Reiss, a spokesman for Lamont, said the rollout based on age “addresses the two paramount goals of the vaccine distribution process: to minimize death and illness.”
“The data overwhelmingly demonstrates a link between age and mortality when it comes to COVID-19, showing the older you are the more likely you are to die from infection,” Reiss wrote in an email. “This approach announced by Gov. Lamont, and supported by our provider network, will lead to a faster and more equitable distribution process with minimal barriers for individuals to receive their vaccination.”
At a Waterbury news conference last week, Lt. Gov. Susan Bysiewicz said an estimated 75 percent of people who have “comorbidities and health issues” are older than 55.
“So if we keep going as the governor has planned, we’re going to take care of 75 percent of our population that has those health issues,” she said.
On Monday, over 600,000 more people in the state became eligible for the vaccine under the new plan. Laura Glomb, 62, was one of them.
“I’d rather give my shot to my kid,” she said. “That’s not an option.”