By any standard, Columbus resident Leslie Junkin has had it rough.
At 3 months, her daughter Isabella was diagnosed with Down Syndrome. Nine months later, Junkin’s husband died in a car accident. At age 8, Isabella was diagnosed with Type 1 Diabetes. Unlike Type 2 Diabetes, whose symptoms can often be mitigated by diet or lifestyle, Type 1 Diabetes is a permanent failure of the pancreas to produce insulin.
“From the moment she was diagnosed until the moment she leaves this world, Isabella is going to need insulin,” Junkin said of her now 16-year-old daughter. “That’s just a fact. She either gets insulin or she dies.”
As a single mom, Junkin works two jobs, including a full-time position as assistant director for Mississippi Parent Training and Information Center, which provides support and training for parents of children with disabilities.
Junkin, 46, has health insurance through her employer, but also has Medicaid-based insurance, which covers expenses not covered by private insurance.
“The portion that Medicaid picks up is about $15,000 per year,” Junkin said. “Without any kind of health insurance, the costs for all Isabella needs would run anywhere from $35,000 to $40,000. … How many people have that kind of money laying around?”
Junkin was one of many incensed last week when an email Mississippi District 114 Representative Jeffrey Guice of Ocean Springs sent in response to a citizen concern went viral.
The episode began early Tuesday, when Nicole Nichols of Richland sent emails to the state’s legislators seeking their assistance in helping her secure medical supplies she needed for her eight-year-old daughter, who has Type 1 diabetes.
“Many parents, myself included, have found that while supplies are deemed necessary and technically covered by insurance, we cannot get Medicaid and/or CHIPS to pay for them, and suppliers aren’t able to help us,” Nichols wrote the legislators.
Guice’s response was widely criticized as insensitive and out of touch with what it means to live with diabetes, a disease from which more than 370,000 Mississippians suffer.
“I am sorry for your problem,” Guice wrote. “Have you thought about buying the supplies with money that you earn?”
Nichols posted the exchange on Facebook and a deluge of criticism soon rained down on Guice, who by day’s end had issued an apology through the House of Representatives communication department before meeting to apologize to Nichols in person at the Capitol on Wednesday.
“My first reaction was, ‘What a jerk!'” Junkin said. “My biggest problem with what he said was this huge misconception he seems to have that anyone who receives Medicaid is someone who doesn’t work, that we’re all sitting home watching TV and getting our nails done on Friday. It was insulting and cruel.”
Despite what she called Guice’s “lapse in judgment,” Junkin said the ordeal has sparked a nationwide conversation about diabetes awareness, especially the unique challenges the disease presents, the often-staggering costs of care and the importance of making sure diabetics get the vital care they need.
“It’s amazing to see the buzz he has created,” she said.
A matter of access
The costs associated with diabetes can be overwhelming, said Irena McClain, assistant director for The Diabetes Foundation of Mississippi. And while new technology has made great strides, many families find it difficult to acquire the best new medicines/supplies because insurance plans are often slow to cover the latest breakthroughs. This is particularly true for Medicaid-based programs.
“It’s interesting,” McClain said. “In a lot of countries, people with diabetes are given just the most basic treatment and they’re pretty much expected to live as invalids. But with the new technology — pumps, monitors, new insulins — having access to that means a person with diabetes can live much more normal life. But, like it with all new technology, it’s expensive. And for people who are on Medicaid, many of those things just aren’t available.”
Junkin said it is not just a matter of having access to the supplies her daughter needs, it’s having seamless, reliable access to those supplies.
“There’s an awful lot of paperwork, things you have to do to qualify,” Junkin said. “Right at the beginning, there were challenges getting Isabella’s insulin pump approved. When we got the pump, we were so excited. Then, there was a new monitor available, which was really important in our situation. With Isabelle’s intellectual disability and her not being able to articulate what’s going on with her, that monitor was just a huge, huge thing. But to qualify, you had to have had at least eight blood-sugar lows that were essentially at a life-threatening range.”
A warrior mentality
Perhaps more so than any medical condition, diabetes requires eternal vigilance. A dangerous change in blood sugar levels can occur with little warning. It’s a 24/7 state of awareness.
“It’s a family illness,” Junkin said. “When you have a child diagnosed with diabetes, it changes everyone in that child’s life. Grandparents, teachers, friends. They have to know what to do, how to use the equipment, how to administer a shot. It means everyone in that child’s life is facing a situation where they have to make what amounts to medical decisions, a lot of times without any warning. You live in a hyper-aware state.”
For Junkin the fear hasn’t gone away, but the nature of the fear has changed.
“When Isabella was diagnosed with Down Syndrome, the questions for me were, ‘OK, what do I do now? How do we make this work?’ And that’s what you do: You figure it out.
“Then, when we got the diagnosis of diabetes, my first thought was, ‘Why is this happening, too?’ But soon, it was back to, ‘How do we make this work?’
“The kind of fear I have now is different,” she continued. “It’s about the quality of care she gets now because that will affect what kind of life she is able to have when she’s 30, 40. That’s what I worry about. Is she getting the appropriate maintenance, supplies? I want to give her the very best chance in life. What parent doesn’t want that?”
Junkin said the Diabetes Foundation of Mississippi has been a vital source of support, information and help.
“I think that’s especially true when you first get the diagnosis,” she said. “You’re in a fog. You don’t know what it means, really, or what you have to do. They are right there during that time. Every step of the way. They provide training, resources, even emergency help if you need it.”
So far, so good
Although their journey has been difficult, even precarious, at times, Leslie and Isabella have a happy, loving relationship. Isabella will graduate from New Hope High School next spring. She has announced, confidently, that she intends to go to college. She is a well-adjusted, happy, confident young lady.
Life may be challenging, but it is not without its rewards.
The best testament of that might the tattoo on Leslie’s left forearm.
“When Isabella was trying to learn how to write her name, I told her that when she could write her name well enough for me to read it, I’d have a copy of it made and get a tattoo of it,” Junkin said.
“When she was 13, she was able to write her name and we went to the tattoo parlor.
“Now, Isabella will tell me, ‘I know you love me.’
“I’ll say, ‘How do you know?’
“She’ll say, ‘Because you have my name written on your arm.'”
Nothing can shake that bond, Junkin said, and she doesn’t intend to let the cost of care break it.
“If I have to sell my house and live in my car to get the things I need keep Isabella alive, that’s just what I’ll do,” Junkin said.
Slim Smith is a columnist and feature writer for The Dispatch. His email address is [email protected].
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