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Wednesday, June 28, 2017

Voices of Care: Kathy in Nevada

This blog is part of an ongoing series of stories from people across the country who would be negatively affected by the ACA repeal bill currently being negotiated in Congress.

Before the Affordable Care Act, there were times in my life when I had health insurance and other times when I did not. Some employers would offer me a plan, and then if I switched jobs, I’d lose it. I tried to apply for coverage on the individual market, but insurers would deny me when I admitted that I had occasional migraines and sinus issues.

In late 2013, I started to notice pain in my abdomen nearly every time I ate anything. By the time my plan through Covered California started in January 2014, the pain was extreme, so I drove myself to the nearest urgent care facility.  Many tests and procedures followed, and By March I was diagnosed with Burkitt’s lymphoma, a rare form of Non-Hodgkin’s lymphoma that’s extremely aggressive.

The pain I had been experiencing was from a mass growing in my stomach that was pressing into my other organs. 

The diagnosis came at the worst time imaginable: my mom died unexpectedly in January and a tree fell on my house in February. I found myself running away to the beach to escape because I was completely overwhelmed and terrified of chemotherapy. But after about a week, the cancer had weakened me to the point where I could barely walk from my car to the hotel room. 

I went home to begin cancer treatment.

Because Burkitt’s lymphoma is so aggressive, I needed 24 hour infusions of chemotherapy for 5½ days during each round, for a total of six rounds. These infusions could only be administered in the hospital. During treatment, I developed multiple complications which necessitated additional trips to the emergency room and a triple bowel resection surgery.  

When I finally finished treatment, I had amassed an astronomical amount of medical bills. Between the $30-40,000 for each round of chemotherapy, multiple hospital stays, and surgery, the cost added up to approximately $1 million. If I had not had medical insurance, I honestly don’t know if I would have been able to continue with the treatments that ultimately saved my life. I also don’t know how I would have been able to bear the stress of the extreme financial burden. There’s a definite chance that I wouldn’t have been able to take the necessary steps to save my life because I wouldn’t have been able to afford to! Or, if somehow the hospital agreed to work with me despite my inability to pay, I imagine I would have lost my home or had to declare bankruptcy. It would have been an impossible situation for sure. 

The gratitude I felt (and continue to feel) for the ACA and the fact that I have medical insurance, is off the charts! The thought of going back to the days of not having medical insurance is so frightening to me. It almost feels barbaric, for lack of a better term, for anyone to be denied the opportunity to take care of his or her health without the looming possibility of bankruptcy, etc. It’s truly inhumane, in my opinion.

I recently moved to Nevada and enrolled in their exchange. I will require monitoring for the rest of my life. Now that the ACA is up in the air, I feel like I’m fighting for my life again! Congress is trying to take away the one thing that continues to guarantee access to screenings and treatment. Because of my age and my cancer history, the new GOP plan guarantees that I will be charged more and that I am at risk for being discriminated against. This is unacceptable. The fact that I could be denied due to pre-existing conditions is horrific to me. The fact that the GOP plan could very well be unaffordable to me is a nightmare. I am so incredibly grateful to be alive! Now my life is in the hands of our current administration and I can only hope and pray that they do the right thing, the humane thing, when it comes to health care coverage. Thank you for listening to my story.

Learn how you can get involved in the Protect Our Care campaign to stop Congress from cutting Medicaid.