When the coronavirus became widespread in Connecticut earlier this year, Tom Dykas was already on a seasonal layoff from his job.
By April, that layoff became permanent as businesses downsized and shed positions due to the economic impacts of the COVID-19 pandemic. That left Dykas, who has Type 1 diabetes, searching for employment.
“At first, there were certain things I was looking for in a job,” he said, “as far as if they offered a good health insurance plan and, most importantly, if the facility was COVID-friendly or that they followed safe practices.”
But with limited options, Dykas, 35, says he’s had to set his sights much lower to just about anything that will provide some income. And that’s a difficult reality for someone with an expensive and time-consuming chronic disease.
“Even though there’s kind of a hold, a pause on things going on in the world right now, your diabetes isn’t on pause,” he said. “That’s always a 24/7, 365-[day] career that you always have to be on top of and find a way to get over these hurdles.”
Managing a lifetime disease like diabetes often comes with a high price tag and can take a toll on someone’s mental health. Connecticut advocates and providers said adding in a global pandemic has left patients dealing with an even heavier burden of financial, physical and mental health needs.
“If you don’t address or acknowledge or be aware of your mental health situation, it could really eat you alive,” Dykas said. “Now especially with the pandemic going on, it just makes things so much more overwhelming and you could just easily get distracted and fall into deep depressive moments.”
People with Type 1 diabetes lose the ability to naturally produce insulin, a necessary hormone for regulating blood sugar. Often diagnosed in childhood, people develop this lifelong disease for reasons not entirely known to experts, though there can be genetic and hereditary links.
Patients are completely reliant on medication insulin, and without it, they could die. But the average price of the drug has nearly doubled in the last five years, leaving individuals and families spending thousands of dollars out-of-pocket each year.
The most common form of diabetes is Type 2, which accounts for the majority of an estimated 275,500 adults in Connecticut with diagnosed diabetes, according to an October state report. It occurs when a person’s body becomes resistant to insulin produced by the pancreas, or when the organ doesn’t produce enough. Treatment can involve nutrition, exercise, medication and lifestyle changes.
Altogether, diabetes and its complications account for $1 in every $7 spent on health care in the United States, according to the American Diabetes Association.
Diabetes of any type can be successfully managed, but that depends on a lot of factors. One of them is health insurance coverage. Dr. Laura Nally, a pediatric endocrinologist in New Haven, said this pandemic has left people struggling with that in different ways.
“Many families of children with diabetes lost their jobs, which can disrupt their access to health insurance and puts them at risk of rationing,” she said.
Nally has Type 1 diabetes herself and is an outreach lead with the Connecticut chapter of #Insulin4All.
“And, of course, as we’re reaching January, those with high deductible health insurance are financially preparing for when they’re going to have a new deductible to meet, so that’s definitely been a problem,” she said.
The Connecticut legislature passed a bill this summer in a special session that caps costs for insulin and other diabetes management supplies. Gov. Ned Lamont signed it into law. But most of the policies don’t take effect until 2022, which isn’t useful for the pandemic.
It’s still a good start, said Jill Ely, a family nurse practitioner and diabetes care and education specialist at Stamford Health. Ely testified in support of the legislation earlier in the year.
“You know, the medications, the testing supplies, the physician visits, educational visits, co-pays seeing specialists, and the stress — there is no way to measure all of that,” she said.
Ely and her colleagues have been working to keep patients connected to their health care during the pandemic, especially with the use of telemedicine. And it hasn’t been all bad — Ely said many of her patients have used the time and circumstances to improve their health.
“For some, it was a decrease in stress because they didn’t have all that commuting they had to do,” she said. “Maybe they were able to exercise more. Maybe they could now cook at home to save money, and maybe there was a better option to eat healthier.”
But Ely acknowledges that the downsides of the pandemic have been significant. Stamford’s diabetes program had to cancel its in-person support group meetings for Type 2 diabetes, which Ely said has some patients feeling emotionally and mentally isolated from others.
Dykas, who recently moved to be closer to his father in Naugatuck, said he knows what that can feel like. He is able to connect with other diabetes advocates and members of the #Insulin4All group on monthly Zoom calls, which help.
“It’s assuring to feel like you’re not alone,” he said, “but in the same sense, it’s sad that you know I’m not the only one dealing with this.”
The coronavirus continues to pose a greater physical risk to people with underlying medical conditions like diabetes. And while the pandemic is ongoing, Dykas hopes people stay optimistic even in the hardest of times.
“Keep trying. Don’t give up,” he said.