Editor’s note: Congress is considering repeal of the Affordable Care Act, and is debating major structural changes, and perhaps significant cuts, to Medicaid, which serves almost 70 million Americans. Voices for Human Needs is reaching out and telling the stories of those who could be harmed if the ACA is repealed without a suitable replacement or if Medicaid is significantly scaled back. We first learned the story of Ryan Fines on medium.com. After that, we tracked down Ryan’s father, Scott Fines of Columbia, Missouri, and he graciously granted us an interview.
Ryan Fines is unluckier than most 2-year-olds and luckier than some.

Unlucky, because he was born with Esophageal Atresia, a rare congenital defect where his mouth did not connect to his stomach, preventing him from eating. Without surgical intervention and extensive nursing and care, Ryan would have died within weeks of being born from starvation and pneumonia.

But Ryan is lucky because he was born under the Affordable Care Act, which prevents insurance companies from denying coverage based on pre-existing conditions, and outlaws lifetime caps on medical expenses.

And Ryan’s expenses, even going forward, are not insignificant. He requires yearly check-ups to check his esophagus for cancer, and will continue to require these tests going forward – they cost about $10,000 each. And that’s not even taking into account the prescription drugs he needs.

“Ryan was lucky, though,” explains his father, Scott Fines, a software developer in Columbia, Missouri. “He was born in 2014 to successful parents with good employer-provided insurance. There were no coverage gaps, no denials of coverage, and no limits on how much insurance would pay. Now, thanks to the tireless effort of the greatest doctors and nurses in the world, no one has to tell him why he can’t eat like the other children. Not every child born with EA is so lucky.”

The fear shared by Scott, along with Brianna, Ryan’s mother, is that the Affordable Care Act will be repealed with no suitable replacement.

“If the ACA is fully repealed, he won’t be able to get insurance on his own,” Scott says. “He most likely won’t be able to afford his medicine, or his yearly follow-ups, so he’ll have to skip them, living with constant pain and the risk of esophageal cancer for the rest of his life.

“Put more simply: I’m afraid my son will die young, with his potential unfulfilled, because somebody thought it would hurt the bottom line of a massive corporation, and so denied him based on a ‘pre-existing condition.’ Or, just as bad, he’s approved, but allowed a lifetime cap that he has already exceeded.”

Scott has no problem admitting that this fight is personal.

“Ryan is my son, and the most important thing in the world to me,” he says. “I will do anything to protect him and his future so that he can have children of his own to worry about. I am sure you can understand that feeling.”

Scott’s message to members of Congress?

“The average person in this world has very little importance, and even less say in the world. We rely on our representatives to protect us from forces which are beyond our control. I cannot stop a gigantic national corporation from preventing my son from getting life-saving treatments, but you can. I cannot stop a hospital from denying him care because he can’t afford it, but you can.

“I cannot protect my son’s health, but you can. I’m begging you: Do not repeal the Affordable Care Act.”

Do you have a health care story you’d like to share with Voices for Human Needs? Do you know someone who depends on the ACA or Medicaid for health care coverage? We’d love to hear from you! You can share your story here.