Below you'll find real stories from patients who've had to deal with the consequences of Fail First policies.

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Heather Grace's Story

I never thought someone like me would end up a step therapy (fail first) nightmare. I was a hard working Webmaster/Web Department Manager at a busy Continuing Medical Education company in Irvine. Here is when I started having classic signs of something wrong with my upper-spine, numbness in my hands, headaches and neck pain, but no one wanted to bother themselves with it. Not my employer, not the insurer, no one but me.

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Paul Gileno's Story

My name is Paul Gileno, and I was diagnosed in 2003 with a failed back syndrome, RSD (Reflex Sympathetic Dystrophy), CRPS (Complex regional pain syndrome), a few back surgeries, and a lot of chronic pain.

In the very beginning it totally changed my life and it totally brought my life upside down because I didn’t know how to live with pain I have never had before. Years later it affects my life in the way that it slows me down for what I want to accomplish. I have to plan ahead because I never know how I am going to feel the next day. I need to find a balance because if I do too much my pain gets too high which I never had to do that before.

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Michelle A. DeBerry's Story

When I am on my medication, I sometimes even forget that I have RA. I live a normal life and am not hindered by my condition. I have been a runner my whole life, and last year I participated in the NYC marathon. In order to achieve this, I had to tweak my diet and make other healthy lifestyle changes. I felt great, but during a three month period I was between insurance, I went without my medication and had a relapse. After just two months without Enbrel, my symptoms started again, and it was a huge reminder of what my life was like before I started treatment. My situation got so bad, that I had to cling onto the railing every time I walked down the full set of stairs of my apartment. My feet hurt so badly, it felt as if I were walking directly on the bone. The pain was horrible.

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Daniel Malito's Story

I am not Rheumatoid Arthritis. Or, at least, that’s what I tell myself every day. I was diagnosed with Juvenile Rheumatoid Arthritis at the age of 11, but I was sick two years before that. Over the years, the arthritis has precipitated many other conditions – diabetes, carpal tunnel syndrome, and hypertension (high blood pressure) all resulted from the original RA diagnosis. As you can imagine, this has made life difficult at times, and impossible at other times. Getting up every day knowing that you are going to go to bed that night in more pain than you woke up with is a tough burden to bear. We go on, though, those of us who are chronically ill, and live our lives the best we can.

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Meridith Binette's Story

I have a state insurance carrier that is in Florida, but I had to fight to get my prescribed medication because it wasn’t covered. My doctor prescribed Enbrel and the insurance company said that they would not pay for it, because they did not cover the injectables under HMO plans.I had to file several grievances and make a very big deal before I was able to get this medication. Prior to this, I had tried another medication for a year that had been covered by my insurance, but it was not working anymore. After it stopped working, the doctor decided to go with the injectable, Enbrel, but the insurance company said that they would not pay for it. My doctor sent several messages to my insurance, explaining that if they did not pay for the injectables, I would end up in a wheelchair and would require several surgeries that would cost them more in the long run. I was one of the worst cases of RA that my doctor had ever seen and it was imperative that I started treatment quickly. As you know, RA is a degenerative disease and damage done to my joints cannot be reversed.

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Maria D’Orsaneo's Story

My name is Maria D’Orsaneo and I am a 39 year old woman with Juvenile Rheumatoid Arthritis (JRA) diagnosed at birth. It is common for those of us with one autoimmune disease to develop others as we age. For myself these include thyroid disease, Vitiligo, and Fibromyalgia (although the link with autoimmunity is a recent theory).

Living with JRA has been a constant battle, often uphill and never easy. After 39 years most of my joints are either replaced or severely damaged. I was fortunate over the years to maintain some “normalcy” in my life as I always reacted well to medications.

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Tessa DeMarco's Story

On a daily basis, Tessa has had to learn to cope with Rheumatoid Arthritis, Fibromyalgia, Scleritis. These three chronic diseases are constantly on the forefront of her mind, but they are not the only conditions she has had to learn to cope with. Her story of dealing with chronic disease commenced when Tessa was born, when she was originally diagnosed with Klippel-Feil syndrome. The full list of conditions includes: Hypothyroidism, Sjögrens Syndrome, cervical disc disease and Vasculitis.

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Janet Scott's Story

My name is Janet Scott. Just recently, I was refused a prescription of Savella and my pharmacy filled Effexor in its place for my fibromyalgia. I was told by my insurer (Heating Piping and Refrigeration Medical Fund) that I need to speak to Express Scripts, because they no longer handle prescription coverage and have transferred the coverage for all prescriptions to Express Scripts. The phone conversation with the patient advocate person went around in circles as she told me i cannot have the Savella, until I went through “Step Therapy”.

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Althea Y.'s Story

Earlier this year, Althea went to see her doctor on a routine visit and was given a prescription for her condition. She then went to her pharmacy to have the prescription filled. The pharmacist took her prescription and made a call to Althea’s insurance company. The insurance replied that they would not pay for Althea’s medication, and her pharmacist said that they could not fill her doctor’s prescription. Instead, Althea was told that she had to obtain a new prescription by setting up a new doctor’s appointment to have a new prescription written.

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Cynthia Toussaint's Story

"Eighteen years ago, my insurance company switched me from Axid, which I was using to treat CRPS in my vocal cords, to a cheaper medication," she recalled. "As a result, I couldn't speak and even experienced pain when whispering. I was forced to 'fail' on two cheaper medications before getting the medication my physician originally prescribed."


Radene Cook's Story

"There were 79 different needle punctures to my spine," Cook said, adding that each of the injections resulted in scarring. "The inside of my spine now looks like a Venus flytrap." Cook was later diagnosed with a condition known as adhesive arachnoiditis, which she blames on the many injections she received. She eventually switched to a private health insurance plan and started seeing a new doctor in 2004. These steps, she said, allowed her to get the drug therapy she needed to control her pain. "It took two years to titrate up to an appropriate opioid dose. Now I have a life back". But she said that she believes the years of delay in getting this treatment were unnecessary. She blames a protocol commonly used by insurance companies, called step therapy, which is designed to lower costs and ostensibly provide higher-quality care. The policies are also called "fail first" policies by some, since the drugs must fail to help the patient before the patient receives coverage for a different option."





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