Three years ago this month, my daughter was rushed from Wilmington, N.C., to UNC Children’s Hospital in Chapel Hill. Just the night before she’d been doing cartwheels in her room. But she awoke sleepy and slightly dizzy. Within two hours, she struggled to walk. A CT scan revealed a mass on her brain, so they loaded my six-year-old daughter onto an emergency transport truck, I climbed in, and we took off.
In Chapel Hill, we were met by the head of pediatric neurosurgery and his team, numerous oncologists, and pages and pages of paperwork to sign. Ahead of us was a six-hour surgery to remove the golf-ball sized tumor lodged at the base of her brain and pushing her brain stem to the side.
At times like these, you think of nothing but the minute you are in. Your eyes and heart stay trained on your child, while your ears strain to hear every last thing the doctors and nurses say, lest you miss one vital word. You don’t sleep. You eat little. You have to remind yourself to breathe.
Insurance is the last thing you think of.
At the time, I had insurance. It wasn’t great, but I had it. It had a high deductible – $10,000 – and once I met it I still wasn’t covered 100 percent. That December, I incurred thousands of dollars in medical bills, and in 2014 I accrued thousands more. My daughter’s tumor, thankfully, was benign. But the surgery, and a 1-inch removal of her cerebellum, meant weeks and weeks of physical, occupational and speech therapy, quarterly brain and spine MRIs, and visits with eye and ENT specialists. She still has to have MRIs, and will need to until she is an adult.
As a small business owner and single mom with two kids, I have to pay for my own insurance, and at the time of my daughter’s illness I was paying about $700 a month. But when I first went to purchase insurance in 2010 (pre-Obamacare) I was denied. I didn’t know why, and the agent I worked with couldn’t explain it. She said I could appeal, but said that rarely worked. So I purchased plans for my kids, and went to look for something for myself.
I began to hear horror stories of people being denied once, and then being blackballed. In filling out an application with a different provider, I was asked if I’d ever been denied coverage. I checked yes. A week later, I got a letter denying coverage. I could have offered to pay $5,000 a month, and they wouldn’t take me. I was blocked out of the market.
I did find what was known as a limited liability plan. It was so affordable, at $500/month! I even moved children on to the plan, but I should have read the fine print. A routine mammogram revealed a tiny lump and the doctor recommended a biopsy, but because the lump was so small, it had to be done in a hospital, under anesthesia. Because it didn’t require an overnight, my plan didn’t cover the $20,000 procedure. I self-paid a negotiated rate of about $10,000. The biopsy, thankfully, was negative.
I dropped that plan. With nowhere else to turn, I signed up for the federal government’s high-risk pool and got my kids plans with a major provider, all for about $850 a month. Several months later I went to a new agent, filled out the application in his office, and within minutes of submitting, was accepted. It would cost about $500 a month, but I felt like I’d won the lottery. I’ll never know why I had been denied previously, but I have my suspicions. The questions on those applications (pre-Obamacare) were tricky, and one wrong turn – mistake or not – could leave you blackballed.
For 2016, I signed up for a plan through Obamacare, and received a subsidy. I paid about $600 a month for a plan with a fairly decent deductible – about $3K. Now, I make more money and will lose the subsidy. Rates are going up, too. In 2017, I will pay $1,100 a month to insure me and my children. It is basically a catastrophic plan, covering nothing until I hit the $11,000 deductible. I don’t know how I will afford it. Sure, I make more money, but I’m paying off thousands of dollars in medical debt, plus other debt accrued because I couldn’t work as much while my daughter was recovering (when you work for yourself, there’s no paid sick days.) The extra money I’m making is effectively already spent.
My difficult journey with health insurance isn’t uncommon. And there are millions of people – small business owners, self-employed workers, contractors, part-timers, and those who work for small businesses – who are on their own for insurance. If you live in a state like North Carolina – one of a few states who now only have one insurance provider to purchase from – then you’re likely facing sticker shock and policies with fewer benefits.
Congress and the next administration promise to repeal Obamacare, the expensive safety net I now have. They haven’t offered up any details about a replacement, but I’m not hopeful. Without some form of a mandate, coverage for pre-existing conditions isn’t tenable. As someone who got caught up in the snare of pre-existing conditions before Obamacare, and who now has a daughter with a pre-existing condition that could threaten her life, I am beyond concerned. What if my sweet nine-year-old can’t get insurance? How will I afford the MRIs she needs? What if she gets another tumor?
When it comes to insurance, there’s a lot of blame to go around, but blame doesn’t fix anything. Our state and federal legislators must put people first and work together to fix Obamacare and the healthcare insurance market. It’s complex, and it’s going to be hard work. But it must be done.
Insurance shouldn’t be something you have to think of. Especially when you’re lying next to your young child in a darkened hospital room, silently pleading for her life to be spared.
Beth Bacheldor is a former journalist who worked at small daily newspapers and spent years covering business technology. Today she co-owns a content marketing agency based in North Carolina. She’s a single mom of two amazing children, a 14-year-old boy who’s a math whiz, and a 9-year-old girl who’s a competitive gymnast (brain surgery and all)!