3/17/2017 by Share Your Story

As a patient, I’m scared of health care reform


I’m scared of health care reform.

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

While more work is needed to help insure those without coverage, 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 fifty years and psoriatic arthritis for twenty five years. The first challenge was getting the right diagnosis.

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

My parents finally found a doctor in a nearby town that 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 ten 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 that 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.

Watch: Diane’s Story Living with Psoriasis


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