People with chronic rare diseases teeter on the brink of denial of coverage every day.
You are sick.
You go to the doctor.
The doctor prescribes medication – explains the hows and whys.
You go to the pharmacy.
Pick up the medication.
You take the drug.
Within a few days, you start to feel better.
The Fairy Tale of Medicine in America.
Imagine having something more complicated – a chronic illness that never goes away. You’ve tried many treatments, and exhausted them all. You and your doctor decide to try a new medication. It’s expensive. It may have some side effects, but the benefits outweigh the risks. You go to the pharmacy to pick up the meds but the pharmacist can’t give them to you. Well, he could if you could pay the thousand-dollar copay since your insurance has denied coverage of this drug. You go home defeated; wondering how much longer you’re going to suffer because your insurance company only sees the short term and their bottom line. Sure, medications and treatments are expensive, but my life is worth so much more.
The Reality of Medicine in America.
This particular reality is where I live, along with, at least, the 25-30 million Americans who also have a rare disease. Some of us need treatments that happen to be expensive. Some with rare diseases don’t even have proper treatment options because the disease is so rare. We’re already fighting for our lives every minute of every day, why should we also have to fight for the treatments we need?!
Since the beginning of this year, my life has been dominated by phone calls to doctors, different medical supply companies, and insurance companies. I’d spend hours on hold and get no answers. So I try a different department the next day, and waited for hours again, still no answers. My phone was dying mid-afternoon because I was on it so much. Day after day I had to give the same story, plead my case, only to get the same result. A big fat NO.
As the weeks went on, and my health continued to decline, I still had to make phone calls. The stress began piling up and it taxed my health. Stress isn’t healthy for anyone, but my body has fewer reserves to fight with. My body was already trying to recover from tube-placement surgery, and the constant worry made things worse. Thankfully, I had my parents to help me fight for what I needed to. Even my doctors and their offices were fighting for me. No matter how many times insurance told me I wasn’t able to get the supplies and medications I so desperately needed, my doctors held strong and kept calling them too.
Yet, we got nowhere.
All I got was angry. Each time someone at the insurance companies told me no, it made me fight harder. It’s now Spring and the issues still haven’t been worked out and I still make phone calls to fight for what I need. The worst part is anytime someone hears what I’m dealing with, they’re infuriated on my behalf but unable to help. NO ONE should have to fight like this for life saving and/or necessary treatment.
I am expensive. My treatments and medications are expensive. I get that, but I’ll never understand why my life isn’t worth the expense. Insurance companies don’t see me as a person, but as line item on a spreadsheet. I’m worth the money. I’m worth the time. I’m worth fighting for.
For now, we still have no answers. My supplies are limited. Each time I go to pick up my medicine, or need to replace a supply/medicine I wonder if I’ll be told NO. But even if the insurance companies do continue to tell me no, I’ll keep fighting them. I’ll keep telling my story and pleading my case. I know my parents and doctors will continue to fight for me too. We keep fighting because eventually, someone out there will see me as more than just an expense.
Samantha “Sam” Smith is a Health & Wellness Coach and the Director of Public Relations for G-PACT, a non-profit patient support group for Gastroparesis. She was born, raised and still lives in upstate New York where, in the warmer weather she loves to run. Sam has organized fundraisers, lobbied congress, and been part of many awareness campaigns for chronic disease awareness.
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