My son, Walter, was born with a rare medical condition. In his first days, we did not know if he would survive the week. He has several birth defects…microphthalmia, agenesis of the septum pellucidum, renal issues, hormone issues, and most critically, esophageal atresia. My son was born without an esophagus. He spent his first 10 months of life in the hospital, plus 4 more months before his 2nd birthday. The protections offered by the Afforfable Care Act allowed my husband and me to focus 100% of our energy on finding the best doctors and surgeons in the country for son’s extremely rare condition instead of rationing his care to stay under a lifetime cap enforced by an insurance company.
My Walter has already received more than $6 million in benefits paid out through insurance, which far exceeds the lifetime cap that was in place for our policy before the ACA. If Obamacare is repealed, my sweet boy will lose his insurance coverage. In my state, the wait list for Medicaid access that’s not income based for medically complex children has been quoted to me as "a few years." If lifetime caps get reinstated, I don’t know what we will do.
For the most part, Walter is healthy now. His countless surgeries have proven to be a huge success and he is now quite busy with the business of being a little boy. He struggles with gross and fine motor delays. He is 3.5 years old and not yet walking. But, thanks to his wonderful Physical and Speech Therapists, he is making strong progress. He is in a special education preschool class through the public school system and his teacher uses words like “bright” and “determined” to describe my special boy. He wants to be a doctor when he grows up, or maybe a “cook-chef.” He is making his way in life and he is HAPPY. And for the most part, the amazing medical care he has received throughout his life has made him healthy.
But the fact remains: He will always have his medical condition. He will always be medically complex. His esophagus was reconstructed and his airway was also surgically repaired. A bad cold could put him in the hospital and possibly take his life, as it has other children with his condition. He is more prone to seizures due to a small malformation in his brain. He may have hormone problems and need hormone replacement therapy. As I mentioned before, he is 3.5 years old and cannot yet walk, so he uses both a wheelchair and pediatric walker. It sounds like a lot. It IS a lot. But, with proper medical care and special equipment, ALL of these challenges can be managed. Without insurance, we won’t be able to afford this highly specialized medical care and his quality of life will suffer. HE will suffer.
Walter is a sweet and loving soul. He has a complex, pre-existing medical condition that was caused by a random hiccup during cell division in his 4th week of gestation. Nothing anyone did could have caused or prevented this. I live in constant fear of the ACA being repealed and insurance companies once again being allowed to drop subscribers for getting sick, to impose annual and lifetime caps, to charge families whose members have pre-existing conditions exponentially more money for worse plans. And if medicaid and CHIP get gutted as well, what will we do? What CAN we do?
Trumpcare puts my son’s life, and countless others, at risk so that the wealthiest people in the country can get a tax break and insurance companies can make even more money.
So, I have to ask: Do you truly believe that people with medically complex conditions and/or disabilities have a cap on their value in this world? What is my son’s life worth?