Vaccine search difficult for some CT residents at risk
Kayle Hill counts herself as one of the lucky ones for finding a vaccine appointment on Thursday when Connecticut opened shots up to anyone 16 and up.
But the first appointment she found while searching Thursday was not until July 23.
Hill, 24, is especially concerned because the medication she takes to treat her rheumatoid arthritis leaves her immune system compromised. She also has Ehlers-Danlos Syndrome, a genetic condition that affects connective tissue — including that in her lungs, which puts her at increased risk of upperrespiratory infection.
As of Thursday, anyone 16 or older in Connecticut became eligible to receive a vaccine. But for many with conditions that put them at greater risk if they catch the virus, they must compete with everyone for limited slots.
“I feel like I went through the five stages of grief today,” Hill, a Waterbury resident, said in a phone interview Thursday, reflecting on her roughly five hour hunt for an appointment.
“Right now I’m in a situation where the vaccine could potentially be life or death, and I’m ready to get it in any way possible,” Hill said.
When Gov. Ned Lamont shifted the state’s vaccine distribution plan to focus on age groups instead of most essential workers and those with high-risk medical conditions, Hill was worried she would be up against everyone else, regardless their condition, when she became eligible.
Though Hill’s condition is not listed at the time in the Centers for Disease Control and Prevention’s guidance for conditions that put people most at risk, it was on a second list of conditions believed to increase risk.
On Thursday, Hill said she felt her prediction had come true.
“If you were to ask me a month ago the hopes for the future... I was really hopeful if people made enough noise… these decisions would be overturned,” Hill said. “It didn’t happen and now we’re here.”
Earlier in the week, Lamont announced that hospitals had agreed to provide “enhanced access” for five medical conditions. The conditions agreed upon were sickle cell anemia, an active cancer treatment, recipients of solid organ transplants, end-stage renal disease and Down Syndrome.
The agreement has led to rebukes from those in the disability community.
“The question is, how is that actually operationalized,” said Deborah Dorfman, executive director of Disability Rights Connecticut. “There’s not one consistent guidance from the state, it could vary a lot based on where you live and where you’re going to get your vaccine.”
The Connecticut organization has filed a complaint with the Office for Civil Rights of the U.S. Department of Health and Human Services over the state’s vaccination plan. Among other steps, the complaint calls for the federal government to direct the governor to expand the prioritization list to include people identified as high risk by the CDC. It also asks that the state allow for people with disabilities to request reasonable modifications of the state’s vaccine policy.
The National Disability Rights Network subsequently sent a letter Thursday supporting that complaint as well.
Asked by a reporter Thursday about the complaint, Lamont said he felt it was “past due,” highlighting the state’s plan to vaccinate people with intellectual and developmental disabilities at designated clinics, and noting that as of that day all age groups are eligible to receive the vaccine.
Josh Geballe, Lamont’s chief operating officer, said hospitals have done “extensive outreach” to people who have the five conditions prioritized by the state. “That’s well under way,” he said.
Jen Benson, an organ transplant recipient from New Canaan runs a non-profit for those with similar situations, said she’s fielded concerns from people about getting vaccinated at large venues due to the risk of infection. “When they look at all their other selections, now they’re all filled up. So that’s been a huge issue for people,” Benson said Saturday.
She said she managed to get her vaccine through a church that had an excess dose. Given the widespread availability of vaccines, she advocated for younger and healthier people holding off on getting their shot to allow people at greater risk access to appointments.
Aside from prioritization through the hospitals, the state’s Department of Developmental Services is also vaccinating people with intellectual and developmental disabilities at special clinics.
Beth Lurie said her 25-year-old daughter Eve, who has Down syndrome, had the chance to get the Moderna shot through DDS, but instead opted to get the one-shot Johnson & Johnson vaccine Saturday morning through a community health center in New Haven Saturday morning.
“It was a dream come true to get it so early,” said Lurie, whose family lives in Milford. She said she heard the clinic was trying to prioritze people with intellectual and developmental disabilities through the grapevine of parents of children with Down syndrome.
Lurie said she’d told her daughter they couldn’t do anything fun until everyone in the family had gotten the vaccine. “Two weekends from now, we’ll maybe go to the movies to celebrate,” she said.
When asked if there was any message she would want to convey, Lurie said: “I guess what I’d say is there’s some vulnerable folks who can’t follow masking or are not good at social distancing. It’s kind of incumbent on us to keep the spread down for the community health… we all need to look out for each other, in that regard.”
Shanon McCormick, executive director of Down Syndrome Association of Connecticut, said the pandemic has thrown off routines for people with Down Syndrome and their families.
Besides the increased risk of severe illness and death from COVID-19 for people with Down syndrome, “there’s a social cost,” she said for people who are isolated and unable to go to work or attend day programs.
“I’ve heard from many, many parents who are homeschooling… they are just exhausted,” said McCormick.A smaller minority have called her with concerns about the safety of the vaccines.
As far as vaccinations, “it’s kind of been all over the map at this point,” she said. Some families McCormick has spoken with have had an easy time getting an appointment through DDS, others have had struggled with figuring out who to contact.
Many feel frustrated that it took so long for people with Down Syndrome to be prioritized by the state. There is, McCormick said a “strong feeling that the rug was pulled out from under them.”