Health, happiness and success are three of the most common wishes parents have for their children’s future. That is why it is so devastating when a child is diagnosed with a chronic, life-threatening condition – it threatens the child’s health but also the child’s future happiness and success.
Prior to passage of the Affordable Care Act, people with pre-existing conditions faced significant hurdles to getting and keeping affordable, adequate health coverage. One study estimates between 50 and 129 million Americans under the age of 65 have a pre-existing condition, ranging from chronic conditions like asthma or heart disease to life-threatening conditions like cancer. Most people are fortunate enough to have coverage through a job, where they can’t be denied coverage or charged more because of their pre-existing condition. But individuals who don’t have coverage offered through an employer have to navigate the treacherous waters of the individual market where they are too often denied coverage or charged exorbitant premiums due to their health status.
But with passage of the ACA, the future looks much brighter for people with pre-existing conditions, including Veronica, a 12 year old girl from Charlotte, North Carolina. When she was just 8, Veronica was diagnosed with type I diabetes. Type 1 diabetes is a lifelong condition which most often strikes in childhood. Although the exact cause of this disease is not known, it occurs when the immune system attacks the insulin-producing cells of the pancreas, leaving the type 1 diabetic unable to metabolize glucose without insulin injections.
Type I diabetes requires round the clock monitoring and care. Her mother, Nikki, said Veronica must monitor her blood sugar 24/7 – every time she eats, off times during the day, even through the night. And she uses an insulin pump to inject insulin under her skin throughout the day and night. But they are fortunate to have good coverage through Veronica’s father’s employer.
There was no history of type 1 diabetes in either Nikki’s family or her husband’s, so she spent the first 7 years of Veronica’s life not all that worried about health coverage. “People don’t think this will affect them. Type 1 diabetes was not on my radar screen. But you don’t know what can come around the corner,” she said. Keeping Veronica healthy and avoiding the serious complications of the disease is something they live with every day.
While Nikki feels secure for now, she realizes that they could lose their current health care coverage just like anyone else. “To know that health coverage is tied to your employment worries me, when I think about her care, because we have to have it. Her care is very, very expensive. It costs over a dollar for one test strip and we have to check it 8 to 10 times a day.” They have good coverage and are fortunate enough to be able to afford the supplies and equipment Veronica needs. But Nikki worries that one day, when Veronica is an adult, she could be denied coverage because of her type 1 diabetes and she can’t live without insulin. “It’s not a question of quality of life; it’s a question of life,” said Nikki.
But knowing that the Affordable Care Act prohibits insurers from denying her daughter coverage or charging her more because of her disease gives her peace of mind. Nikki may lose sleep monitoring her daughter’s glucose throughout the night, but she doesn’t have to lose sleep worrying about her daughter’s future once she’s no longer on her family’s plan.
And at this point, Veronica’s future looks limitless. She’s a talented musician –playing both saxophone and piano – and an A+ student with interests that could take her in many different directions. Veronica enjoys science, math and writing, but her favorite thing is probably composing music. Nikki feels her responsibility is to get her daughter through “this thing” – growing up with type 1 diabetes – “so she can contribute whatever she’s going to contribute.” And when she’s all grown up, Veronica can make her life choices without fear of being turned down for coverage or charged more because she has type 1 diabetes.
— JoAnn Volk, Research Professor and Project Director The Center on Health Insurance Reforms, Georgetown University Health Policy Institute