00:56 - Source: CNN
Cancer survivor: I didn't understand Obamacare

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Xeni Jardin: If we don't protect Americans like me, Americans like me will die

The Affordable Care Act is the reason I am living as a cancer survivor, she writes

Editor’s Note: Xeni Jardin is an editor and founding partner at BoingBoing.net. The opinions expressed in this commentary are solely hers.

CNN  — 

I was lying in bed with my dog, recovering from my most recent surgery, when a news alert went off on my iPhone after midnight.

“Breaking news: The Senate has just taken a major step toward repealing the Affordable Care Act,” the headline read.

Fear. That’s what I and millions of my fellow Americans felt reading that headline, because this ACA debate is real for me. It’s not health care. It’s life support.

I am a breast cancer survivor because the Affordable Care Act, politicized by the GOP as “Obamacare,” ensures that for-profit insurance companies can’t deny me coverage because I had the audacity to be diagnosed with cancer.

Xeni Jardin

My insurance provider paid people to work hard to deny me life-saving chemotherapy because they thought I had a preexisting condition. I am alive in part because that is no longer legal under the ACA. In cancer treatment, timing is everything. Cancer does not wait to progress until your coverage kicks in.

The Affordable Care Act is all that stands between me and insurance company greed. I only have enough in me to fight cancer, not insurance companies.

I was diagnosed in 2011, a few months after purchasing my first insurance policy. I had finally mustered up the courage to leave a violent, abusive relationship, and was newly in control of my finances. As I planned to finally escape, one of the first steps was to buy insurance, so I’d feel better about riding my bicycle on the streets of Los Angeles where I live.

And one of the first things I did when my coverage kicked in was go in for my first mammogram. I was excited to have insurance coverage, a new and independent life before me, and I felt inspired to share the weird and unsettling experience of going in for a first mammogram. I livetweeted the experience, and snapped a nervously glam selfie of myself in the clinic robe.

I was diagnosed with breast cancer within hours.

Chemotherapy began a few months later, after all the scans and pathology reports. Surgery, drugs, radiation and more surgery followed. Surviving cancer requires serious ongoing medical care. It’s not easy. Nothing is guaranteed. The most recent was a hysterectomy, a few weeks ago, to protect me from new disease caused by the very cancer medication I took to prevent a recurrence of breast cancer. The hysterectomy took place 3 days before this Christmas, five years after the initial diagnosis.

Before the ACA, I remember one chemo session that stands out from the rest – because it almost didn’t happen. I arrived at the clinic early that day, bracing myself for the return to my veins of one drug so caustic, the nurses put on extra-thick gloves and face masks before administering it intravenously. The nickname for this chemo drug is “red devil.”

A clinic staffer from the billing department came out to the waiting area, and pulled me aside before the red devil (aka Adramycin) could be administered.

Her voice was kind, and her face reflected great discomfort.

Your insurance company has opened a fraud investigation because they believe you had cancer as a pre-existing condition, she told me. They thought I was secretly keeping cancer to myself for years, and just decided to buy a policy at the last minute and pull one over on everybody.

I’d dragged myself that morning to the cancer clinic, bracing for harsh medicine that would maybe save my life, if I was lucky. Medicine that brought me to my knees vomiting for hours, medication that caused total hair loss across my entire body.

The insurance company wanted to shut that down for fraud.

Believe me: Before my diagnosis, cancer was the furthest thing from my mind.

I was a yoga-junkie vegetarian non-smoker and nondrinker. It never occurred to me that people like me could get cancer. To now be told that I was suspected of crime, insurance fraud, was a new shock.

Eventually, the fraud investigation was cleared. I got my treatment. By the grace of God and science, I lived. I continue to receive treatment so that I may continue to live, one day at a time.

Countless Americans before me experienced the same kind of shocks before ACA. “Pre-existing condition” was a very scary term. And it is poised to become so once again, if the ACA is repealed.

This is not a joke. If we don’t protect Americans like me, Americans like me will die.

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    As I write this, there is no evidence of disease in my body. Thank you, God. This is as close to cured as I get, until and unless we find a cure.

    I am missing a breast, a uterus, 19 lymph nodes, a latissimus dorsi, a whole lotta money, and a chunk of my sanity. But I’m alive, and I will dedicate every bonus day of my life to fighting for the right all Americans have to receive life support, like me, when they need it most.

    Like many of the challenges before us as a nation today, the fight over ACA is no longer about left or right, conservative or liberal. This is about whether we want to be a just, honest, compassionate and humane society, or a country that watches its own die while the rest of the civilized world recoils in horror.

    My story is not unique. Please listen to the many of us who have fought hard to live long enough to tell our stories. All we are is America itself, fighting for its life.