No Lifetime Limits for Children Born with Pre-existing Conditions

My name is Robyn Martin.  I have excellent employer-based health insurance, unlike millions of other people in my situation. I am healthy. Although I am passionate about this issue, I’ve not considered myself to be personally affected by the Affordable Care Act until recently.

Robyn Martin _ Dr Jax with Dr Bear 1.23.17.jpg

My son, Johannes -- we call him Jax -- was born five years ago with a rare genetic disorder and a congenital heart defect. He's a twin, and a little brother. He is gregarious and loving, curious and creative, silly and smiley. He is also a low tone child with chronic health issues that mean that he will constantly need specialists monitoring and intervening in his health, including but not limited to cardiology, neurology, urology, ophthalmology, audiology, and genetics.

He spent the first 21 days of his life in the NICU. He has had so many surgeries in his short life: on his heart at 3 months, with 10 days in the CICU; on his reproductive system within the first year; on his eyes and ears within the second year, and several additional non-surgical interventions. He is at risk for ailments like pneumonia that land him in the PICU for a week or so at least once a year.

We were blessed to have employer based health insurance covering him, but even with excellent coverage, our family would have been at risk. With all of these medical interventions added to the typical well-baby check ups, he would have reached a million dollar lifetime limit before he turned 3 years old. Why is that significant? Our child will need significant medical intervention throughout the rest of his life. Jax faces at least one additional open heart surgery to replace a faulty valve. He has neurological issues that are just being discovered. Without the protections the Affordable Care Act, our family would have to budget a significant amount of money to pay for these surgeries and the preparatory appointments, money that we simply do not have available to us. We would have to go into significant debt or even bankrupt to pay for lifesaving surgery for our child. And we would do that! But doing that would take away from the daily care and provision for our other two children, would put our entire family in financial ruin. The downturn of our family situation would likely also negatively impact Jax's successful recovery.

The health reform law ended the practice of refusing or limiting insurance coverage based on pre-existing conditions. Jax has a myriad of these conditions and before this law, I fear that I would be unable to leave my job before he aged out of my coverage. While I love my job and have no plans to leave, not feeling stuck is an important part of job satisfaction. And a lot can change in before he ages out of my coverage. 

Jax and I have a lot to be grateful for. And the peace of mind represented by this health reform is amazing.  The ACA isn’t about pages and pages of regulations and rules.  It isn’t about the controversies we hear spun on talk radio or argued about in debates.  It’s about this little boy who will be able to access quality, affordable health care through his life.  It’s about our family’s ability to keep our house and pay our bills and afford to care for all three of our children, not just health care for one kid. 

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