I’m one of the nearly one million Americans who have Parkinson’s Disease. It’s a terrifying and debilitating illness that can leave me frozen — fully aware of what’s going on around me but unable to do anything about it.
The first time my body stopped working, I stood just steps inside my front door for hours, unable to move an inch. My cell phone was just steps away in my purse, but no matter how hard I tried, I could not get my body to pick it up. It wasn’t until 3 a.m. that I was finally able to reach my phone to call my daughter for help. The experience was what they call a “Parkinsonian Crisis.” It left me deeply traumatized and gripped by a lasting sense of vulnerability — my independence could disappear at any time.
One of the things that helps that independence is a medication regimen. I now take two medications that address the body freezing and chronic tremors that Parkinson’s causes.
These drugs have helped me manage some symptoms. But they are becoming more and more expensive, because Big Pharma sees me not as a human, but as a profit center. To have a quality life, I have little choice but to pay through the nose — whatever they demand, not what I can afford.
When there is only one treatment that works for you, there is no shopping around. Even with insurance, the costs add up quickly, especially on a fixed income. Like many Americans, I budget carefully. I believe in taking responsibility for my health. But no amount of healthy living changes the reality that Parkinson’s requires ongoing treatment.
And things keep adding up, both for my body and for the bank account. Earlier this year, I underwent hip surgery and needed additional medication for pain management. I believe in holistic remedies and the power of good food and exercises to keep us healthy. But with hip surgery and a neurological disease, I count on those medicines to keep my independence.
Many Americans skip doses or stretch one dose into two when they can. That’s not an option for me. For someone with Parkinson’s, inconsistent treatment can mean worsening mobility, a greater risk of falls, loss of independence, and serious medical complications. In many cases, it forces patients into emergency rooms and hospitals, costing far more than the medications themselves.
I moved to the Fort Worth area to continue living my full life near my daughter and her family — not to become a burden on them. My medications make that possible, but I refuse to be strung along by Big Pharma's pricing game just so they can cushion their pockets.
At the end of the day, no patient battling a chronic illness should also have to battle the cost of staying functional. Drug companies are supposed to help people, not take advantage of us.
I know I could freeze again at any time. That’s a fear I will live with every day of my life — and it is made worse by the constant anxiety over the rising cost of the medications that help keep me mobile and independent. Freezing the prices of drugs would take one of the biggest burdens off the minds of Parkinson’s patients like me, allowing us to focus less on survival and more on living our lives with dignity.
Dr. Annalisa Banegas-Peña is an educator and resident of the DFW region.
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