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The New Voices We Have to Empower After the AHCA Vote

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Let’s talk pre-existing conditions and what happened in Congress on May 4, 2017.

To begin, I’m angry, I’m sad, I’m bewildered, I’ve shed tears in disbelief and frustration. It’s as if I am mourning my diagnoses all over again. It’s not just those with life-threatening illnesses and chronic illnesses that are affected — the fight has become bigger, and hopefully stronger. More voices will be raised against this bill that affects the millions of Americans who now qualify as having a pre-existing condition according to the bill.

Many of us with chronic conditions, illnesses we will battle for our lifetime, cancer patients, heart patients, autoimmune patients, etc., knew this was coming. We had heard the rumors, the speculations, the possibilities of this happening, and continued to fight. Now, it is become so much more. Women have been hit hard, as Planned Parenthood looks to be defunded and pregnancy and C-sections are categorized as pre-existing conditions. Survivors of domestic abuse, rape and sexual assault, and patients with mental health conditions are all at risk. And the bill could charge patients more money for having previously had “fractures,” “tonsillitis,” “varicose veins,” “ear infections,” “acne” and “allergies.” Tell me how this makes sense. Tell me how this is fair to the citizens of the leaders of the free world.

Before the Affordable Care Act (ACA), many patients in need were overlooked for healthcare coverage because of pre-existing conditions. They were either paying exorbitant amounts in out-of-pocket-expenses or receiving less than quality care through “free care.” The ACA allowed those with pre-existing conditions access to health insurance.

Before enrolling in the ACA, I was one of those patients who received sub-standard care at a local free hospital. Time after time I slipped through the cracks, was passed off as exaggerating my pain levels, they misdiagnosed acute pancreatitis, emergent appendicitis, and additionally, thyroiditis. My local urgent care stepped in and literally saved me when no one was listening. Pancreatitis hospitalized me for five days and appendicitis required emergency surgery — all arranged by an urgent care — not the hospital who was treating me for my Crohn’s disease, who was allowing my health to fail, and almost let me die. I cannot go back to that.

Because of the ACA, I have an amazing team of physicians who treat and monitor my varying health conditions. A gastroenterologist for my Crohn’s and colitis who has saved my life three times, a hematologist who monitors my blood work carefully after anaphylactic reaction to IV iron for treatment of anemia, a neurologist and pain physician who monitor my chronic migraines and an anomaly recently found in my spinal cord, a rheumatologist and orthopedic who listen, support — validate and additionally get me the best care and physical therapy for my Ehlers-Danlos syndrome.

Without the ACA, none of this would have been possible for me, and I hate to think where I would be without it. I hate to think where many American patients would be without it. Now, millions more Americans have joined our fight. The fight and true importance of affordable healthcare, the basic right to healthcare, and that quality healthcare is a human right. The sick, the healthy, the in-between, the rich and the poor, all deserve to be treated with dignity. Money and pre-existing conditions should never dictate the level of care you receive. This is America, leaders of the free world. We should be leading by example.

I’ve had a day to process all of my emotions and I am feeling empowered to speak up. And as for my fellow spoonies, we are fierce, we are warriors, and we fight to win — every single day. We know how to do this.

Let’s share our experience in using our mighty voices to help empower those who are now joining our fight against the notion of pre-existing conditions and stop this before it passes the Senate. We have the resources, and this is isn’t our first rodeo. Let’s do some good!

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Thinkstock photo by turk_stock_photographer

Originally published: May 8, 2017
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