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Kentucky Voices on Health Care: Bette Robinson

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Bette Robinson can’t skip her monthly doctor visits.   In response to a virus she had as a child in the early 1980s, her body’s immune system mistakenly destroyed the insulin-producing cells in her pancreas. Robinson has Type I diabetes — an autoimmune disease.   She’s now a self-employed, licensed clinical social worker, who at 47, must find her own health insurance.

Bette Robinson can’t skip her monthly doctor visits. 

In response to a virus she had as a child in the early 1980s, her body’s immune system mistakenly destroyed the insulin-producing cells in her pancreas. Robinson has Type I diabetes — an autoimmune disease. 

She’s now a self-employed, licensed clinical social worker, who at 47, must find her own health insurance. 

Since she was 10 years old, Robinson has had to be vigilant about her health, monitoring her glucose levels making sure she took care of herself. Unlike the challenges she faced during her teenage years as a diabetic, she must now financially navigate through her adulthood — meeting the numerous hurdles of medical expenses. 

Without belonging to a large employer’s insurance group with a low-cost premium, Robinson starts every year strategizing how to cover the high costs of both her medicine, her needed medical supplies and meeting her insurance premium.If she were to pay cash for one bottle of the insulin her body needs, it would cost her about $275 for a month’s supply. She re-uses some of the reservoirs for her insulin pump.

“About $650-$670 for three month’s worth of supplies,” Robinson said. “In the beginning of the year, it’s very expensive because nothing’s covered (before she meets her insurance deductible). I have to pay 100 percent of my insulin, my supplies and then I have other complications from diabetes.” 

Robinson has a hypothyroid as a result of her diabetes, which requires her to also take medication for it and an ACE inhibitor for her kidneys. And she must always keep glucose tablets on hand. 

“There’s a lot of fear there just because I happen to have a chronic illness that I have to be vigilant about caring for...so I can continue to be a productive member of society,” Robinson said. “I don’t know what life looks like without diabetes.” 

When she was a child, Robinson’s mother Sallie Dailey would worry about her daughter sleeping over at someone’s house and her insulin levels crashing. She worried about her daughter having a healthy diet as a college student and all the temptations that came with being away from home.She now worries the costs associated with Robinson’s medical condition will overwhelm her daughter.

Robinson buys her own insurance now as a result of the Affordable Care Act. 

“I’m terrified for her and can’t imagine how frightened she must be,” Dailey said.  “She doesn’t qualify for a subsidy and we have no faith that the current government in power, either state or federal will truly care.” 

When Robinson started working as a contractor, no insurance company would cover her.

Robinson was denied individual coverage for her medical condition numerous times before the existence of  Kentucky Access, a statewide health insurance for residents with high-cost medical conditions. 

The Affordable Care Act changed her situation. She can no longer be denied coverage for her pre-existing condition. But Robinson has had to switch insurance policies almost every year since getting coverage through the ACA — about eight or nine insurance companies due to her expensive pre-existing condition. 

With such high upfront costs, Robinson said she doesn't have a lot of money to put back for retirement. She jokes that she will have to "work until lunch hour on the day I die," because there's no retiring in her future. 

“It’s scary. I cannot be covered. I don’t have that option,” Robinson said. “It’s very scary when we think about the way health care is going. It’s crazy to think I wouldn’t be able to afford to care for myself. 

We’re not talking about a luxury here. We are talking about being able to get up every day and being able to do what you do. It’s expensive and it only seems to be getting worse as...the  the Affordable Care Act...threatening to take that away. The big insurance companies don’t like it (the ACA)  and the people that are getting hurt are the ones who need insurance the most.”