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People with disabilities, pre-existing conditions, upset over change in vaccine prioritization

Gov. Ned Lamont's unexpected vaccine eligibility announcement Monday was welcome news for teachers and people over 55 but left many people with disabilities, and their advocates, upset, saying they felt blindsided by the decision.

Lamont announced that vaccine eligibility will be age-based for the next several months, starting with eligibility expanding to those ages 55 to 64 on March 1, and that educators can be vaccinated at designated clinics in March.

"By laying out a clear timeline for eligibility for the vaccine, the strategy allows everyone in the state, including essential workers and those with chronic conditions, to know when they will be able to schedule an appointment," a news release from the governor's office stated.

The word "conditions" was not included anywhere else in the 1,225-word announcement, and "disability" or "disabilities" didn't appear at all. The release said scenarios other than an age-based one "proved overly complex and confusing," which some with disabilities considered a slap in the face.

Kathy Flaherty, executive director of Connecticut Legal Rights Project, said the state is basically saying, "You folks are too complicated, we don't know how to deal with you, so we're just going to take the easy way out." She said she thinks Connecticut cares more about getting to the top of the vaccine charts, wanting to "go on MSNBC or CNN and say what a great job we're doing," than about "doing hard and complicated things."

She questioned why the Lamont administration didn't seem to prioritize vaccination of people in facilities run by agencies the administration's own people are running, such as the Department of Mental Health and Addiction Services, Department of Correction and Department of Developmental Services.

CLRP provides legal services to low-income people with psychiatric disabilities, and on a personal level, Flaherty has been working part-time since March and out on partial disability as she deals with the effects of long-haul COVID-19.

Up until now, the public conversation was not whether people with comorbidities would be included in the next phase, but which conditions.

The Centers for Disease Control and Prevention has a list of conditions that put people at increased risk of severe illness from the coronavirus and a list of conditions that might put people at increased risk, and it's been unclear whether the state would include both lists or just the first in the next phase of eligibility. Now, it's clear the state is including neither.

The first condition on the first list is cancer. An American Cancer Society spokesperson said Monday she is unable to comment on Connecticut's guidelines specifically but that cancer patients should be included in high-risk groups prioritized for the vaccine.

"The American Cancer Society and the American Cancer Society Cancer Action Network call for states and the federal government to establish fair and equitable vaccine distribution plans and ensure protection for the most vulnerable," Theresa Freeman said in an email.

Living with Crohn's disease and taking the drug Humira, Groton resident David Janetos would be included in a category on the secondary list from the CDC: immunocompromised state from the use of an immune weakening medicine.

"I had high hopes that I was going to be vaccinated in March," he said, but at age 27, the new age-based approach has him getting vaccinated no earlier than May 3.

Janetos recognizes that even if people with underlying conditions were included, he might not have been. He would've been OK with it if the state said only specific conditions could be included and he wasn't on the list, saying he still would've been disappointed but not as much.

But Janetos said he's not judging state government officials too harshly, that he recognizes they have to make hard decisions on allocating the vaccine and any strategy would leave people out. He's more upset with the country for not having a nationalized health care system "that probably could've distributed the vaccine more efficiently."

Kathleen Stauffer, CEO of The Arc Eastern Connecticut, said she hopes the age-based criteria will take into consideration the specific needs of people with intellectual and developmental disabilities.

She noted that a nurse explained to her a couple of years ago that on average, the "medical age" of a person with IDD is 10 to 20 years older than their actual age, so "if you are going to base vaccine eligibility on age alone, it completely disregards the reality of people with IDD."

The CDC listed adults of any age with Down Syndrome as being at increased risk of severe illness from the coronavirus.

As a high school assistant principal, Waterford resident Greg Gwudz was "really happy" to see that educators can be vaccinated in March. But as the father of a son with a rare genetic disorder that has resulted in a lot of hospital stays, he has other feelings.

His son is only 7 and therefore not eligible for the vaccine. But Gwudz does hope that when the vaccine is approved for pediatric use, his son is at the top of the list because he's so immunocompromised.

It makes him feel good that he's heard doctors have already been asked to make a list of pediatric patients to be prioritized when the vaccine is approved for them. But he wonders whether the same thing could've happened for medically fragile people over age 16.


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