What the New Health-Care Bill Means for Chronically Ill People Like Me and Our Families

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Commentary Health Systems

What the New Health-Care Bill Means for Chronically Ill People Like Me and Our Families

Erin Kotecki Vest

My kids are in constant fear today will be the day Mom doesn't come home. My husband juggles work and trying to hold the house together while I'm hooked to an IV. Now the Republicans want to ruin every other part of our lives.

I walked out of the hospital last week on my own two feet, a gaping hole filled with infection in my stomach, and a date with an infusion of antibiotics that I hope will save my life. The plastic tube placed into my stomach and intestines to help manage symptoms from my chronic illness had become infected. With my weakened immune system, that could mean death.

I have lupus, an auto-immune disorder that has hospitalized me for various reasons more than a dozen times since 2010. To say I have “pre-existing conditions” would be an understatement. My chronic illness has wiped out our family’s savings and caused more than a few nights of severe worry for my husband and children. My entire family is in therapy because of this condition. I’ve fought my way back from the brink of death more than once.

But it’s not my current infection, as deadly as it may be, that has my family wringing their hands. It’s the U.S. House of Representative’s American Health Care Act (AHCA), passed and on its way to the Senate, that’s putting a bull’s eye directly on my back. Should the Republicans have their way, my battle will turn into an all-out war to save my life without losing everything we have in the process.

Back in 2014, my family passed on my husband’s employer-provided insurance because we found a better deal with the Affordable Care Act, or Obamacare. MSNBC did a story on us, and how we’d save at least $19,000. In fact, we saved even more. My pre-existing conditions couldn’t be used against me. For once, we felt as though we weren’t going to lose it all simply because I got sick.

Sex. Abortion. Parenthood. Power.

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Flash forward to 2017. The AHCA says that states can allow insurance companies to charge people with pre-existing conditions more for coverage—placing them in “high-risk” pools. There are the young and healthy who don’t often need a doctor unless it’s for something unexpected. And then there are the ill and elderly: the group of people insurance companies seem to fear, as we cost them the most.

Although the list of conditions would vary by state and insurer, the cesarean sections I underwent to have both of my children also may be considered pre-existing conditions. So might rape and sexual assault. My hysterectomy, thyroidectomy, colon resection, gall bladder removal, chronic Clostridium difficile—also known as the deadly infection C.diff—sepsis, anxiety (which you would have, too, if you had to deal with my health issues), high blood pressure (after years on high doses of steroids), fibromyalgia, Raynaud Syndrome, Sjogren’s syndrome, rheumatoid arthritis, a list that just keeps going—all of them mean that I might pay tens of thousands of dollars more per year to stay alive.

According to the American Association of Retired People, those with pre-existing conditions could pay up to $25,700 a year. I don’t have $25,700 per year for insurance. Do you? Does your kid have asthma? How about your husband’s bad back? Treated for high blood pressure? Arthritis, pregnancy, obesity, mental illness, diabetes, even being transgender could be considered a pre-existing condition. I won’t be able to pay for my many treatments and medications without insurance. Neither, I bet, will you. Are they simply weeding out those of us who aren’t up to their standards?

I’m scared as hell of these Republicans and their legislation. My very life hangs in the balance. And yes, according to a Harvard study, 45,000 deaths annually are actually linked to a lack of health coverage.

This is not science fiction. This is not that far off.

My family has been through hell with my chronic illness. My kids are in constant fear today will be the day Mom doesn’t come home. My husband juggles work and trying to hold the house together while I’m hooked to an IV.

Now the Republicans want to ruin every other part of our lives. Because of my condition I spent years on opioids and am now on opioid maintenance therapy. If this plan goes through, my opioid maintenance would likely be cut: Not covered. This is how politicians fix one of the biggest crises in our lifetimes? By sweeping the opioid crisis under the rug? Thirty films of my maintenance drug cost $387. I need 120 per month. You do the math.

I don’t know how to plan for what could be on the way. The Senate is said to be changing major portions of the House’s bill and I can’t imagine what Frankenmonster they will come up with for the American people.

Many of us, including President Obama, have acknowledged the shortcomings of the Affordable Care Act. However we also saw it as a step forward in helping millions of people in the United States, like myself, to find a way to manage chronic illness and keep my home, pay for groceries and medications, and attempt to avoid total financial ruin. Unfortunately the Republicans are pushing me to the brink. My medical bills continue to pile up. My attempt to finish school fell short when student loans became too huge of a burden. With the GOP plan I see no way out.

I’d also be remiss if I didn’t mention my member of Congress, Rep. Steve Knight (R-Santa Clarita). We met at a debate during his primary. Fearing for my life, I approached him and point-blank asked if he would vote to repeal Obamacare and replace it with something that would ruin my life. He told me: He would work with Democrats to fix the shortcomings of the ACA and help people like me.

Rep. Knight, you lied. You not only voted, repeatedly, to repeal the ACA, but you voted for this monstrosity of a House bill that could see me dead. I want you, Rep. Knight, to explain to my family why we have no money for Mom’s medications. I want you, Rep. Knight, to explain to my kids why we can’t afford their college tuition. I want you, Rep. Knight, to personally help my husband the next time I’m laying in a hospital bed worried how we will pay yet another medical debt, who will get the kids to school, who will watch them after school and cook dinner, and who will pick up the many, many prescriptions and find the money to pay for them under your diabolical plan.

The same offer goes for every other House Republican who voted for this legislation, sentencing disabled and chronically ill people to their deaths. There are millions of us who could lose coverage and millions of us who vote. Regardless of how sick I become, remember this: I will vote, and I will work to lobby everyone I know to vote. Either we will defeat you, or we will die trying.