This is one of 10 stories included in the report, Voices of the Underinsured: Kansans Tell Their Stories.
Bob is one of the 18 million diabetics in the United States.
He has type 1 diabetes, an autoimmune disease that strikes children, adolescents and young adults causing the pancreas to stop producing insulin, a hormone that the body requires to convert food to energy. It’s a lifelong illness that, even if managed carefully, can lead to kidney failure, blindness, heart attacks, strokes and early death.
When interviewed, Bob, 40, had just stopped working for a Kansas City, Kan., business that didn’t offer health insurance. While employed there, he purchased an individual policy for $140 a month. Bob’s wife, Mary, and daughter, Ashley, have coverage through Mary’s employer.
His individual plan provided him with general coverage but it excluded any expenses related to his diabetes because it was a pre-existing condition. Bob said he thought purchasing the policy was the responsible thing to do, but he wondered about what he was actually getting for his $140 monthly premium.
“I pay a monthly premium for nothing really because I still have to pay for all my insulin and doctor visits,” he said. “It only covers anything non-diabetes related, which also
worries me because if something did go wrong, they could say it was caused by type 1 diabetes.”
Bob’s health insurance premium combined with what he paid for uncovered insulin and testing supplies totaled about $440 a month.
“I spend $120 a month on test strips and about $180 on insulin a month. That’s a lot of money,” Bob said. “My mortgage is only $560.”
When including the cost of Bob’s quarterly physician office visits, his monthly expenses were still less than what it would have cost for Bob to join Mary’s plan.
To make ends meet, Bob purchased his diabetic testing supplies online at reduced prices, put home repairs on hold and decided that his family would have to go without many of the amenities that other families take for granted.
“We shut off the phones, shut off the cable service, shut of the Internet,” he said. “Everything we could cut out, we cut out.”
They also started limiting activities that connected them to social supports, interactions that can be particularly helpful during tough times. For instance, they decided that they couldn’t afford to take trips to visit friends and family because of high gasoline prices.
Despite their frugal lifestyle, Bob and Mary were forced to depend on their parents and grandparents for financial support.
“They’re actually the reason we’ve been able to make it,” Bob said, explaining that in addition to money, the couple’s parents and grandparents sometimes took them out to eat and helped with clothes.
“My wife’s mom and dad bought my shoes that I’ve got on today and my jeans,” Bob said.
Food was another issue. The couple’s need to stretch their grocery dollars as far as possible sometimes made it difficult to make healthy choices.
“We want to get the right kind of food,” Bob said. “You can buy cheap pastas and things but it’s not good for you. It certainly isn’t good for someone with type 1 diabetes because pastas are full of carbohydrates. The healthiest food is expensive.”
For Bob, the stress of managing his disease was intensified by having to also juggle the family’s limited finances.
Several years ago Bob owed $30,000 in medical debt that he couldn’t pay. So, he filed for bankruptcy and the financial pressures eased for a while. But at the time of the interview, his debts were growing again because of his inability to keep up with his monthly medical expenses.
The pressure Bob felt over the debt and the sleepless nights it caused put his already fragile health at greater risk.
“With type 1 diabetes, my life expectancy isn’t much past 65 and retirement for me is 67,” he said. “I’m likely not going to make it.”
But for Bob, there were a few bright spots on the horizon at the time of the interview. Bob said he had started a new job and was looking forward to purchasing health insurance from his new employer. Although he was going to have to wait three months to enroll, he was grateful that his new, more comprehensive policy would cover expenses related to his diabetes.
Policy Note:
Bob is like many Kansans that have been denied coverage of a pre-existing condition. In Kansas, an insurer can deny coverage for pre-existing conditions for 90 days in the small and large group markets, depending on the individual’s previous health insurance coverage. A plan in the large group market (51 or more employees) can deny coverage for a pre-existing condition treated in the past three months and a plan in the small group market (2−50 employees) can deny coverage for a pre-existing condition treated in the past six months.
Bob had an individual plan. In Kansas, individual plans allow denial of coverage for pre-existing conditions for two years and allows the exclusion of all coverage for a specific condition for the life of a policy.
Federal health reform, effective six months after passing the law, prohibits insurance plans from denying children coverage for pre-existing conditions. In 2014, this prohibition will extend to adults.