Why I'm Afraid Every Time I Hear 'Repeal and Replace'

Every day, I turn on the news to see another story about big plans to change health care.

As a patient living with a chronic illness, I’m scared about the future of health care. I’m scared every time I hear the phrase “repeal and replace.” I’m scared about what these proposals mean for my health, my ability to access necessary treatments, and how I’ll pay for my health care without going into bankruptcy.

If you’re a patient like me living with a chronic illness or condition, I bet you’re scared, too.

The Affordable Care Act and the Maryland Health Benefit Exchange were important steps in expanding health care coverage for many previously uninsured patients in Maryland. More work is needed to help insure those without coverage. However, all the politicians and health care experts seem to have forgotten something: coverage isn’t care.

Insurance companies have no problem selling us coverage but then fight us every time we try to access the treatments we need. Before the Affordable Care Act, I fought tooth-and-nail with my insurance company to fill my prescription. After the Affordable Care Act, I still fight to access the treatments my doctor says I need to survive each and every day.

I know firsthand that coverage isn’t care. I’ve lived with psoriasis for more than 50 years and psoriatic arthritis for 25 years. The first challenge was getting the right diagnosis.

At 5 years old, 8 percent of my body was covered with flakes and scabs, the cause of which no one could immediately diagnose. I wasn’t allow to go to school with everyone else because they feared I was contagious.

My parents finally found a doctor in a nearby town who said I had psoriasis, an autoimmune disease characterized by a faulty immune system that speeds up the growth cycle of skin cells. It affects as many as 7.5 million Americans and 125 million people worldwide. Its impact is significant, causing embarrassment and discomfort, and in some, difficulty standing or sitting for long periods of time or using their hands.

We have come a long way since 1963 when I battled to get the right diagnosis. We haven’t come far enough. Though I’ve lived with it for more than two decades, I was only properly diagnosed with psoriatic arthritis just 10 years ago.

Between the two conditions, it has taken me decades to reach some level of control over my condition. If you’re a patient living with a chronic disease, you know the relief that comes when you finally discover the right treatment. I found a prescription that allowed me to wake up in the mornings, capable of standing and walking.

Unfortunately, my health insurance company did not feel this was proof enough to approve my doctor’s prescription.

Now, I must fight with my insurance company every three months through phone calls, paperwork and appeals so I can receive my correct dosage of medication. This is an issue that millions across the country are facing, whatever their particular ailment is.

What are we to do? Is anyone listening to us? We depend on our treatments, drugs, and medications each and every day. Is there anyone that will look out for us?

Patients can’t take the chance that another big health care law will deliver coverage without care. We need to speak up. I may be afraid, but I’m turning my fears into action.

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.

Thinkstock photo by monkey business images