The Long Arms of Childhood Illness

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If you saw my two daughters today, you would never know that some medical insurance companies would historically have considered them uninsurable.

My youngest daughter’s history of illness has been documented in my blog and detailed in articles in a variety of publications. From infant reflux to laryngomalacia to a congenital heart defect, from eosinophilic esophagitis to chylothorax, she has been under general anesthesia 17 times in her eleven years. Though the first nine were full of medical intervention, the last two following her final surgery have been nothing short of miraculous for her. She now eats well, has full energy, is growing, and leads a completely normal life. She has a pediatrician, a dentist, and an orthodontist — a far cry from the pit crew of specialists she used to see.

Even so, without the Affordable Care Act, she could be denied health insurance for the rest of her life.

My older daughter is even more robust and healthy-looking than her sister. Few people know that she lives daily with a condition called vesicoureteral reflux, a malformation of the ureters that filter urine from the kidneys into the bladder. If she ever gets a bladder infection, the infection will “reflux” back up her ureters into her kidney, rapidly turning into a kidney infection that brings with it the frightening experiences of bloody urine and high fevers. Dietary efforts keep this condition manageable, a conclusion we made after a year of pursuing other ways to stop her unending and painful infections. She’s been healthy for nearly 6 years now, without infection or issues.

Even so, without the Affordable Care Act, she could be denied health insurance for the rest of her life.

Some perspective: we have always had fantastic health insurance. For the entirety of our children’s lives, we’ve been members of a great PPO plan through my husband’s employers. Though the policy has been renegotiated several times, the coverage has been basically a variation on a theme: they’d cover a majority of the cost of any medical care up to a certain amount per person, then a certain amount per family; once that threshold was met, the insurance company would cover a slightly higher percentage of the cost of services; and once we reached our magic “out-of-pocket maximum” for the year, medical care would be covered at 100%. With our younger daughter, we often met that benchmark by early spring each year.

All this is after we pay the hefty premiums each month. During our younger daughter’s early years, the out-of-pocket maximum hovered around $7,500 on top of the premiums. If we had ever dropped our coverage for more than a few months — if, say, my husband had found himself out of work for too long — then we almost certainly would have been denied coverage for our children before the existence of the Affordable Care Act.

If you think I’m wrong — if you think surely there would be compassion for a sick little girl — you can think again. This article from The Washington Post in 2006 (when my youngest daughter was a year old), reads, in part:

Health insurers have issued guidelines saying they could deny coverage to people suffering from such conditions as acne, hemorrhoids and bunions…

…Uninsurable conditions included pregnancy, and being an “expectant father” was grounds for “automatic rejection.” So was having received “therapy/counseling” within six months of the application. There was also this more general disqualifier: “currently experiencing/experienced within the last 12 months symptoms for which a physician has not been consulted.”

We were lucky that the $7,500 in out-of-pocket costs was possible for us in those years. Paying out of pocket for the entire cost of treatment could have bankrupted our family several times over. Each of her endoscopies, which began in 2010, came at a cost to our insurance of roughly $25,000. Between June of 2010 and June of 2011, she had eight in total — plus clinic visits, medications, lost work time for my husband and I, and other costs associated with treating her. We’re talking about more than $200,000 in medical costs for us if we’d had to pay for the endoscopies — all outpatient procedures — ourselves. I’ve been too afraid to consider the cost of the inpatient cardiac surgeries without insurance. The pre-surgical testing alone cost thousands of dollars.

How can we, as a society, condone insurance companies who would deny health coverage to a child who needs it?

I will spend the rest of my life as a parent worrying about how my daughters’ medical issues will affect them: will they become sick again? Require more surgeries? Need expensive medications? When they are over the age of 26, will they be able to find insurance companies to cover their medical needs?

If protections against denying coverage for pre-existing conditions are ever rescinded, my daughters might someday have to choose between medical care and housing.

Please vote accordingly.

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8 thoughts on “The Long Arms of Childhood Illness

  1. Thank you for reminding us of the important gains the Affordable Care Act has brought us. It can be easy to forget what we have gained while we have it, but we do have to hold onto them!

  2. What powerful examples of what this has done for people. Thank you for sharing. We still have a long way to go on improving health care in this country but I agree that this was an important step forward.

    • Thanks, Erin – I really hope that no matter how else we reform health care to make it available to everyone, we keep this important protection in place.

  3. What a powerful message. It’s so sad to think that current health care system is in the business of making money, not necessarily helping sick people, especially kids. I’m so happy to read your girls are doing better.

  4. […] — historical and current — which would have qualified, before the ACA, as “pre-existing conditions.” I have one daughter who was born with a congenital heart defect that affected her […]

  5. Clare Tallon Ruen

    Thanks for your inspiring dedication. This is how things should function. I am surrounding you all with sunshine!

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