ORLANDO, Fla. — A week after Florida health officials announced COVID-19 vaccine doses would be shipped to select hospitals for people under age 65 deemed “extremely vulnerable,” the families who championed the move say they are no closer to getting their loved ones the shot.
“No. Not at all. We haven’t heard anything,” said Heather Pritsker of Winter Springs, whose 35-year-old brother, Travis Clements, has Down syndrome. “There’s so much up in the air, and it’s so frustrating.”
Among groups at higher risk of dying from COVID-19 — including people who have heart and lung disease and those with diabetes — people with Down syndrome are especially in danger. According to a large study from the United Kingdom published last fall, they are five times more likely to be hospitalized with the virus and 10 times more likely to die — the result, researchers suspect, of anatomical differences in their respiratory and immune systems and a tendency to have heart defects.
According the National Down Syndrome Society, while life expectancy has increased dramatically in recent decades, it’s still only about 60 years.
“The fear of him getting COVID is terrifying, but so is the isolation he’s been living in for the past year,” said Pritsker, who has taken a leave of absence from her job as a high school counselor to reduce the risk of passing the virus to him. “The vaccine would just give us the feeling that, if he were to contract COVID, at least it wouldn’t be deadly.”
Shortly after the first COVID-19 vaccine was approved for use, Florida Gov. Ron DeSantis ordered that hospitals — and only hospitals — could inoculate individuals it deemed “extremely vulnerable.” But he left it to the institutions to clarify who qualified, and until this week, no Central Florida hospital did.
In recent days, though, Orlando Health issued a statement saying the category included not only people with Down syndrome but also those with cancer, chronic kidney disease, chronic obstructive pulmonary disease, coronary artery disease, cardiomyopathy, solid organ transplant patients, obesity, pregnancy, a history of smoking and Type 2 diabetes.
People with a host of other conditions — from asthma to high blood pressure to liver disease — “might be at an increased risk,” the hospital said.
In all, Orlando Health reported Friday that it had vaccinated 3,500 “medically vulnerable” individuals, but a spokeswoman said that “at the request of AHCA,” Florida’s Agency for Health Care Administration, those shots would go to people who are already hospitalized at Orlando Health.
At AdventHealth, doctors reported getting only a fraction of the doses they requested from the state for the “extremely vulnerable” group. And those went quickly.
Dr. Neil Finkler, chief medical officer for acute care services at AdventHealth’s Central Florida Division, said he and his colleagues studied the available evidence to determine how many current and recent patients would qualify as extremely vulnerable.
“We came up with a number of just under 40,000,” he said. “And we did ask the state for 40,000 vaccines. And the state supplied us with 500.”
Ultimately, Finkler said, the vaccines went to those considered at highest risk: solid organ and bone marrow transplant recipients. When more is available, he said, it will first go to cancer patients undergoing treatment, and then people with lung disease, sickle cell disease, multiple sclerosis and other illnesses.
“There’s a whole list of other conditions that we know put people at risk, and we would love to get them (vaccinated), Finkler said. “But this is all a matter of supply.”
State Rep. Carlos Guillermo Smith, a Democrat, who pushed for hospitals to provide clear guidelines on who is considered extremely vulnerable, said he understands the constraints.
“We’re not suggesting that they’re flush with vaccine,” he said. “We even went out of our way to say we understand that you have very low supply, which is going to vary from hospital to hospital… But these are very high-risk individuals younger than 65 and they are extremely frustrated, not only because they’ve not been able to get the vaccine, but also because they understand that hospitals are authorized to administer it to them, and yet they can’t get any information.”
It’s not just people with Down syndrome either.
In Lakeland, 56-year-old Paul Caretta, has been diagnosed with respiratory-onset amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease. He has already had part of one lung removed. He relies on a power wheelchair and hand-held respirator.
“When I asked my pulmonologist early last year what my chances of survival (from COVID-19) would be, his response was ‘You’d be a goner,’” Caretta said. After he heard hospitals had gotten extra doses just for people deemed extremely vulnerable, he spent the week calling any facility within driving range — as well as his state and federal elected officials.
“I was informed by most of the hospitals that they were still only vaccinating front-line health care workers or those over 65,” he said. “My local hospital … actually told me that they were giving their doses to the family members of their staff.”
But after his plight was detailed in article in Lakeland’s The Ledger, he said, the hospital’s chief operating officer called, offering to send a home health worker to his house to administer the vaccine Friday.
“I’m relieved,” he said, “but I shouldn’t have had to do all that to get it.”
Friday afternoon, state health officials announced that another 28,500 vaccine doses for “extremely vulnerable” residents will be shipped to hospitals next week — in addition to the 28,500 doses shipped a week ago. It’s a move Smith welcomed but said was still not enough.
And it’s not clear yet whether the new federal retail partners slated to administer the vaccine in Florida — including Walmart, Winn-Dixie and Publix — will set aside doses for the group.
“I get that there’s clearly too many in need and not enough vaccine to go around,” said Heather Barnes, executive director of the Down Syndrome Association of Central Florida, the group that initially drew attention to the issue. “But we’ve been fielding phone calls all week from frustrated parents, and we’ve not heard of one person with Down syndrome who has even been able to get an appointment. In fact, the parents are complaining that they’re still being told by the hospitals that they’re not eligible.”
Instead, the message is that only people 65 and over can get the shot, Barnes said.
“We live in a state with so many seniors that we could be vaccinating people 65 and over for the next year,” Barnes said. “If that’s going to be the case, at least tell us. Because, right now, it seems like it’s going to be forever.”
