What I Want Lawmakers To Understand About Health Care

I am the mother of a bright, happy, 7-year-old cub scout named Jack, who was born with a “pre-existing condition” called cystic fibrosis. Recently, the GOP supported a cruel and unusual federal court ruling that tries to dismantle the Affordable Care Act (ACA) and put his life at risk.

Cystic fibrosis is a progressive, genetic disease – it gets worse over time and is ultimately fatal. Every day of Jack’s life is precious, and to keep him as healthy as possible for as long as possible, new therapies and costly medications are constantly needed.

Jack also needs the protection provided by the ACA, which forced insurance companies to stop discriminating against people with pre-existing conditions and removed lifetime caps on coverage.

Currently, Jack takes 14 different medications costing $104,000 per year. Jack needs these medications to survive; they help him eat and breathe. Jack also needs frequent hospital visits, tests, and therapy, and, when you add it all up, his care costs more than an average CEO’s salary.

I need you to understand that our family is lower middle-income. Without insurance, we do not have the ability to afford the things Jack needs in order to live. The only reason Jack is insured today is because the ACA protected him from insurance companies denying him coverage simply for having the bad fortune of being born with a disease.

I need you to understand that I used to be a swing voter who leaned to the right. But you took my faith in you for granted. Medical parents like me are informed. The lives of our children depend on it. So, when you came after my son and kids like him, you lost my vote and the vote of every other parent like me.

I need you to understand that, to us, fighting for the lives of our children is second nature. I’m part of the Little Lobbyists, a movement of medical parents who are standing up to you. We’re calling you out and demanding you protect our families. Today the ACA that protects our children’s future is under threat by a lawsuit filed against it by GOP Attorneys General, and not defended by the GOP administration.

As candidates, we heard the GOP promise to protect people with pre-existing conditions in the midterm elections. So now it’s time to make good on your promise. Protect the ACA, reach across the aisle to improve it, and stop threatening health care for people like my son.

I need you to understand that we are watching your attacks on our health care and will never forget it. The blue wave you saw in the midterms will be nothing compared to the storm coming in 2020 if you continue to threaten our children’s lives. An army of medical parents, disability activists, and voters living with pre-existing conditions, and millions of others will personally see to it.