My Story - (8/2/2018)
Hello, I am Taylor Bentley and I live in a small...
I was 16 years old the first time I stepped inside the United States Capitol Building. It was the first time I got to be my own advocate about my personal health and about the health care system we have in the United States. It was a long time coming, because my health and health care has affected me for as long as I could remember.
My childhood was bloody.
When I was a younger, I had nosebleeds that would last for hours. When I got my tonsils removed, I had blood seeping down my throat for six weeks. I was bruised to the point where my teachers would ask, “Are you safe in your home? Does anyone hurt you?”
I found out that I have a genetic bleeding disorder called von Willebrands Disease. My blood doesn’t clot normally because I’m missing certain proteins that make it clot. Luckily, there’s a treatment for this lifetime disease. The only downfall is that it’s extremely expensive and hard to get insurance approval.
Through the insurance that my Mom had at her job, we were able to get this really expensive medicine, which is called factor. It’s derived from human plasma, and contains the proteins I need to make my blood clot. The factor has to go through your blood stream, so twice a week, I stick a needle in my arm (Like you would when getting blood drawn) and I infuse this medicine into my blood stream.
I’ve been doing my own infusions since I was 12 and it is the most liberating experience in the world. No matter where I was, I was able to give myself my factor, and it allowed me to live as normal as possible throughout high school.
In 2013, I wasn’t allowed to get my factor anymore. My insurance company didn’t want to pay for a medicine that was so expensive, they didn’t want to pay for a teenager who was using $30,000 worth of medicine each month.
I was furious. I didn’t think a 16-year-old girl could ever be that angry. My insurance company had no right to take away the medicine that allowed me to live a normal life. How dare they. Instead of being mad for no reason, I wanted to channel that anger into advocacy.
Through a local non profit, I was able to go to Washington D.C. with my Mom in March of 2013. I met so many people with bleeding disorders and I got hands on training about how to be a better advocate, not just for myself, but for others facing health care issues. During that trip, I got the chance to speak with Nevada Representatives and Senators and tell them about the issues I was facing with my insurance. They were responsive and listened to me. I finally felt like I was heard.
I instantly knew that I wanted to be someone who constantly advocated for health care.
I wanted to be strong, and powerful, and stand for something.
When my Mom and I got back to Las Vegas, we began our 14-month appeal process with our insurance company, to advocate for my right to infuse factor. We took our appeal all the way up to the directors of our insurance company. I got to sit in a board room and look into the eyes of the people that wronged me, and tell them how they made my life a living hell for the past 14 months. Every single director was in tears hearing how their company had treated me. After that meeting, I got approval to have my factor, and to self infuse it, until I was 23 years old.
I felt like I was on top of the world. I felt like my voice mattered. I was able to advocate for myself (with the help of my Mom) and was able to make a difference.
Since then, I’ve gotten to travel the country and teach other kids and teens about how to advocate for themselves. I get the wonderful opportunity to teach kids how to use social media to advocate, to teach them why advocacy is important, and how they have the power to make a difference. I’ve gotten the chance to help people in my community advocate for themselves, and have even sat in on the appeals meetings they have with their insurance companies. Seeing people approach advocacy with strength and grace is the most rewarding thing I have experienced.
I don’t think I will ever stop advocating for better health care for those in the bleeding disorder community. I don’t ever want to stop being a health care advocate. Laws will change, insurance companies will change, but I won’t.
Everyone should be their own advocate. Everyone should be brave enough to take a stand for what they believe in. Everyone should take a chance at trying to make a difference. No action is too small, and nothing will go unnoticed.
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