For My Son, Medicaid Cuts Don't Mean Hard Choices. They Mean Life or Death.

By Audi McCullough, The Washington Post

23 June 17

I'm a single mom raising a little boy with a serious heart condition. Republicans in Congress should hear stories like mine.

y son Kaden was born with a bigger list of obstacles to overcome than most kids.

At a little over two months old, we discovered Kaden has tetralogy of Fallot with an absent pulmonary valve, a congenital heart condition. A little later, we found that Kaden also has Von Willebrand’s disease, a bleeding disorder. Kaden, now a spunky 12-year-old who loves science and theater, has had multiple open heart surgeries, survived on life support, suffered a stroke, a lived through a bleeding disorder, and the list goes on. The medications that keep him alive cost between $300 and $1,000 each per month, and he has a rotating cast of 11 different doctors that we visit regularly.

On top of that, I have some medical challenges of my own: While I was undergoing gall bladder surgery, a doctor accidentally severed a bile duct and I’ve had to have multiple invasive procedures to repair the damage. I was left with a chronic condition that requires specialists and medication for the rest of my life and makes it even harder for me to give Kaden the care and support he needs.

Without health care coverage through Medicaid, Kaden might not be alive. With President Trump and Republicans in the White House threatening to slash more than $1 trillion from Medicaid — the program that Kaden and I depend on for coverage — my worries have gone from how we’ll manage our conditions to whether we’ll survive them.

Every mother understands that I am willing to do anything and everything I can to protect my son’s health and his future. I juggle being a single mom and holding a full-time job so I can provide for Kaden. Even though I work full-time, I can’t afford my employer-sponsored health insurance; Medicaid and Children’s Special Health Care Services keep my son alive.

If President Trump and Republicans in Congress succeed in gutting Medicaid so they can give a giant tax break to their billionaire buddies, Kaden and I will be the ones who pay the price. And there are millions of families like ours who can’t afford to foot the bill for this administration’s heartless budget.

We have dealt with lapses in our coverage before, and I know how it feels to not be able to afford an inhaler or a medication that Kaden needs. It isn’t as though we’ll be choosing between a nice vacation and a quicker doctor visit, or a new car or an important surgery. We’ll be choosing between life and death. My mind races as I play out the tragic scenarios we could face if Congress passes the Trump budget or the House health care law: At what point will I have to choose between paying for food and for Kaden’s lifesaving medication? What if giving up one still doesn’t allow me to pay for the other? What then?

No mom should have to ask these questions. And yet, elected officials in Washington are trying to dismantle a health care system that currently protects the lives of millions of Americans, including our youngest, our oldest and our most vulnerable.

Providing health care for those who need it the most reflects our nation’s values. We take care of our family, our friends, our neighbors. We give each other a hand and help each other out. This is who we are.

Those values seem to have been stripped away by callous policymakers who are intent on destroying a health care system millions depend on to line the pockets of their wealthy campaign donors. But here’s what I’ve learned: chronic conditions, terminal illness and medical emergencies don’t discriminate based on how you vote or how much money you earn. Our ability to get and stay healthy shouldn’t either.