The Common Good

Fighting For My Daughter's Life, and Against the Insurance Company

[Editors' note: In the March issue of Sojourners, Celeste Kennel-Shank's article, "Prescription: Reform" describes how last year's health-care reform legislation is already helping people, including children with pre-existing conditions. Below, one woman shares how every parent's nightmare -- an illness that threatened her baby's life -- starkly demonstrated to her the injustice of pre-existing condition exclusions.]

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My 8-month-old daughter is a prime example of how absurd the pre-existing condition concept is. Imogen was born completely healthy on May 2, 2010. At the time, I was on my employer's group health insurance. Imogen would only be covered through my insurance for 30 days; through a misunderstanding on my part, I didn't apply for health insurance for her until she was a little over two weeks old.

When she was 15 days old, we took her in to her pediatrician. Imogen had been breathing fast and eating poorly. Once we got in to the office (thank God it was in the office!) her health started to decline rapidly. Her blood oxygen went down, her heart rate shot up over 230, and she started going white. A flock of nurses and doctors appeared, nurses started attempting to run IVs, and an ambulance was called. Upon arriving at the hospital, her heart was racing so fast that her pulse couldn't be felt in her ankles or wrists. After several days, countless drugs, x-rays, EKGs, and a blood transfusion, it was determined that Imogen has an accessory pathway in her heart -- an extra electrical connection that confuses the heart and pulls it out of its normal rhythm.

In the middle of this crazy time, it became clear to us that Imogen's insurance (through my policy) was going to expire within weeks. At that point, we didn't know how long she would be in the neonatal ICU, or what her treatment going forward would entail. Even one day in the NICU with all of her tests and medications would have an astronomical price tag. So, we needed to get insurance, and fast. Our first option was my group insurance at work; because it's a group, any pre-existing condition is ignored. The cost was $474 per month -- ouch.

Fortunately, three months later we were able to get her on the Healthy Families insurance plan (which is what the federal State Children's Health Insurance Program, SCHIP, is called in California). Healthy Families is amazingly affordable and I'm so, so thankful for it. Her insurance is now only $24 a month ($18 if you set up an automatic withdrawal). Because I also have a pre-existing condition (epilepsy), at its highest, our family's cost for insurance premiums alone was $850+ per month. It remains our highest bill next to rent.

Our family turned out fine. Sure, we had to pay extremely high premiums for a few months, but at least we could afford them (albeit through the student loans that we currently have). It all worked out, but I had to fight to figure it out, and we had to pay a price that many families can't afford. But what choice did we have? Could our daughter miss her EKGs? Could she go without her medications? Absolutely not. Luckily for us, even in the worst case scenario, our friends and family would have helped us pull through.

The question that is most upsetting to me in this whole process is this: What if we didn't have the resources we have? We would have racked up medical bills and been unable to pay them. Eventually we'd likely get turned away from the medical offices, so we'd try the ERs, where they can't refuse you. Those bills would pile up. Creditors would call. Perhaps we'd declare bankruptcy. The cost of saving our daughter's life would haunt us financially for years to come.

How many people don't have what we have? What about people whose families, extended families, and communities are poor? What about refugees who don't have the capability to fight their way through a difficult web of information? What about people that can't get a group or conversion plan? It's the knowledge that those people are out there suffering, with just a breath of chance between us, that makes me want to share our story.

Melanie Crutchfield is a writer and designer who lives with her family in San Diego, California.

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