Age 13, Texas

Meet Victor. He loves going to school with his friends and playing baseball on the weekends. He's a big fan of all types of music, especially Beastie Boys and anything with drums. He loves when others dance with him and going to the roller rink when the lights are low and the disco ball is on. He laughs when his younger brother gets into trouble, loves swings and attending social events. When the weather is good, he loves to go to the zoo, take a stroll, visit parks, ride his tricycle, go in the pool and attend outdoor festivals.

At birth Victor seemed "typical," but seizures began at only 10 days. He had Infantile Spasms – the worst seizure diagnosis for an infant – with upwards of 50 seizures per day. Vic was diagnosed with epilepsy at 12 weeks of age, after a long convulsive status seizure. Victor has no known syndrome, but several diagnoses including: cerebral palsy, cortical vision impairment, scoliosis, reflux, restrictive lung disease, spastic quadriplegia, intellectual developmental disability. He had spinal fusion surgery in 2016, and most recently had a double hip reconstruction. Victor is a very special bionic boy who smiles through it all!

Prior to the ACA, when Victor was an infant, we spent many hours and sleepless nights in the hospital. Life was a constant worry about how we'd survive if his medical costs went over his lifetime limit of $2 million. By the age of 2, Victor's total healthcare costs reached over $600,000 and the term “pre-existing condition” had appeared on more than one denial letter. There was nothing during my pregnancy which indicated that my son would have any health concerns. Every day that passed, I was haunted by Victor’s unknown underlying health conditions and how we’d manage raising a disabled child. On top of it all, the financial stressors grew each time I opened a hospital bill and insurance letter.

Then came the Affordable Care Act, which eased many of our worries. Vic still waited 8 years before he came off of the Medicaid waitlist, thankfully my husband had a very good insurance policy through his employer. But everything changed when we relocated out of state. I quickly learned not every State’s Medicaid program is the same, and we underwent another lengthy Medicaid application process. As a single-earner family, we found ourselves facing even more uncertainty when my husband’s job situation suddenly changed and he was unemployed. It was an extremely stressful year! Fortunately, Victor was finally accepted into Texas’ Medicaid waiver program

Medicaid helps manage our son’s high medical costs. Victor's 2016 medical expenses cost over $600,000. While a little over half was covered by private insurance (which could NOT deny care because of pre-existing conditions), Medicaid paid most of the remainder. We understand how the #ACA and #Medicaid have helped our family. f yet another proposed ACA repeal bill is not voted down as they were previously, we know the reality we face: medical bankruptcy as our son suffers. We also know the cost to fellow tax-payers would be 6x greater if we were faced with the grueling decision to institutionalize our dear boy to avoid bankruptcy and homelessness; rather than simply maintaining the health care we have now.

Without Medicaid we would have had to earn well over $500,000/year to cover Victor’s medical costs and our regular living expenses. The average American household income does not earn $500,000/year – nor do we! Multiple breathing treatments a day, oxygen, daily medicines, nursing care, therapies, medical equipment, and Victor’s overall civil rights are at stake every time congress proposes an ACA repeal bill, or plan to gut Medicaid. None of these plans make any sense unless the goal is more sinister. If the goal is to save taxpayers money the repeal plans and gutting Medicaid is not the way to do it! Disruption of the insurance markets, and putting lives at-risk will most certainly cost taxpayers more.

Sharing our story is what helps create CHANGE and we must continue telling our stories and striving to do better. Affordable quality healthcare is peace of mind. It is the difference between life and death or going bankrupt! All lives are important and should be valued – no matter a person’s age, ability, socio-economic background, religious beliefs, cultural background, or education level. Health care is a human right and a moral obligation to support LIFE and cherish every second of it. There is no good reason for Americans to be denied quality healthcare for all. I will continue to share our story about how we live pro-life every day!

Submitted by Laura, Victor’s mother