upworthy

congenital heart disease

Becca Atherton first saw the operating room when she was a baby. Over the next 24 years, it became a familiar sight.

Atherton, who suffers from Tetralogy of Fallot, a congenital heart disease, and pulmonary atresia, a respiratory disorder, estimates that she takes 50 pills a day and has endured four open-heart surgeries in her young life. Together, she and her mom watched Jimmy Kimmel's monologue detailing his newborn son's health emergency.

"We looked at each other when he started talking about pre-existing conditions and we were both like, 'Finally!'" Atherton says.

After Kimmel's monologue went viral, hundreds and Americans whose lives have been touched by chronic childhood illnesses took to social media to thank the talk show host for giving voice to their stories — and speaking up for their rights.

The speech captured an experience familiar to millions of families from all walks of life — from the terror of finding out your child has a life-threatening illness, to the gratitude for the work of local hospitals and medical professionals who treat those illnesses, to the importance of funding the National Institutes of Health.

It was Kimmel's emotional plea to save affordable insurance coverage for people with pre-existing conditions, however, that struck the strongest chord with his audience.

"If your baby is going to die and it doesn’t have to, it shouldn’t matter how much money you make," Kimmel pleaded at the end of the emotional monologue.

The Kaiser Family Foundation estimates that more than 1 in 4 Americans under 65 have conditions that would render them uninsurable under a pre-Affordable Care Act insurance model.

Kimmel's speech came as congressional Republicans are considering changes to their health care bill that could allow insurers to charge patients with pre-existing conditions higher rates. A recent amendment to the bill would allow states to wave provisions of the ACA that forbid insurance companies from factoring health history into plan pricing.

Atherton, who received the same diagnosis as Kimmel's son when she was a baby, believes Congress could do more to demonstrate they believe their plan is right for their constituents.

Becca Atherton. Photo via Becca Atherton, used with permission.

"If your new health care plan is so amazing, then prove it by giving up your government funded health care plan and join the rest of us on your new plan," Atherton says.

A Virginia performer, who goes by Jolene Sugarbaker, says they don't understand "people saying they don't want their tax money going towards people getting care, but don't mind it going towards a wall."

Sugarbaker, who had Tetralogy of Fallot surgery at 8 years old, worries that under the new plan, poorer Americans with chronic childhood illnesses won't be able to give their children the kind of care Sugarbaker received or will go bankrupt trying to pay for it.

Andrew O'Brien, a Maryland father whose 2-year-old daughter Keely nearly died from a congenital heart defect when she was an infant, said Kimmel's monologue "brought back feelings and memories," from the most difficult weeks of his family's life.

O'Brien, a Republican, believes the ACA needs "real changes," but doesn't want to see protections for patients who require intensive, ongoing care through no fault of their own scrapped.

"To go backward now and deny people the ability to obtain insurance based on a pre-existing condition would be really harmful," he says.

Andrew O'Brien (R) with son Liam, daughter Keely, and wife Jenny. Photo via Andrew O'Brien, used with permission.

He would like to see Congress craft a new bill that fixes the things that don't work with the current law, while keeping its most popular and effective provisions — like the backstops for customers with pre-existing conditions — in a way that isn't "overly partisan."

While the health care debate continues to rage in D.C., for people with such conditions and those who love them, Kimmel's contribution might wind up being invaluable.

Atherton, who will eventually need another heart surgery, hopes Kimmel's monologue will raise awareness of people like her — and what they stand to lose if their health coverage goes away.

"These are people's lives you're dealing with," Atherton says. "We have worth."