Two years ago it became clear that Nicky’s power chair was on its last leg. The chair was 6 years old and it was literally falling apart. Not only that, Nicky was 9 when he got it, and he was now 15, he barely fit into the thing anymore.

The Physical Therapy dept at CHLA started writing referrals to the Insurance company to get a new chair. Nothing happened. Several letters later, several appointments for measurements later, several phone calls to the insurance and a year and a half later, there was still no response, no approval, no denial, no nothing. It was like they were ignoring the whole thing. Last April (2013) at the yearly appointment with the Pediatrician, she stated to me that the referral had to come from ‘her’ for the Insurance to even ‘look’ at it. Well, I wish someone… anyone really, would have told me this… oh, 15 months ago?

She put the referral through, which took 2 months to be approved. In early July the company that supplies the power chair came over to assess Nicky’s needs and to measure him. He stated to us that the insurance had only approved an ‘appointment’ to assess Nicky’s needs, not the actual chair. Fantastic. When he left he stated that he was going to submit the request for the chair and ‘at the very latest’ we should have the chair by early September. Early September comes and goes and no word, from anyone, about anything.

By mid September I put a call in to get an ‘update’. A lady called me back to let me know they were still dealing with ‘paperwork’. By early October she stated to me the insurance was still in the process of approving the chair, they were still waiting for forms to be faxed back. A few days before Halloween, low and behold, here’s our chair. Not the chair we asked, not the chair we needed. I specifically requested a chair I could break down and lift myself into the trunk, where the heaviest piece would be less than 30lb. When I called to find out what happened to my ‘light’ chair, he stated to me they could not get one (yet I found a ton of them online) and so that’s what I got. Super. The heaviest piece went from being 60lb to 70lb. Now for sure, I could not lift this thing AT ALL, considering I sprained my wrist and my back lifting the 60lb one. Gee… thanks.

This means, of course, I can only actually use the chair if there is someone that can help me lifting the thing back into the trunk, so, basically when I take Nicky to school. When we go to the hospital I have to chug along the manual chair. I made peace with it. Whatever. It is what it is.

someecardseb3Wait… is there more? There is. Just yesterday, I got a bill from the power chair supplier, yes, 3.5 months AFTER they delivered the chair, stating that MY portion of the bill for the chair is $874! Mind you, we have great insurance, my husband works for the Federal Government, any DME (Durable Medical Equipment) should be FULLY covered by the insurance. Why didn’t they covered the whole bill? Why wasn’t I told IN ADVANCE that there was going to be this enormous c0-pay? Do they really think I am going to pay this? Really? After all they put me through and have put me through the past 17 years? Bankruptcies, washing and re-using without bandages, endless co-pays, denials upon denials, making me wait years to get surgeries and the rest of it? I am so mad right now I could spit nails.

This is but a portion from my book ‘Losing Alex‘, which explains my point of view quite clearly and to the point.

“But insensitive friends and relatives were not the only ones adding insult to injury. On the day of the funeral we received a bill from the hospital for $2,500. Our PPO Insurance had paid only 80% of our bill, 20% was our portion. This was the first time we had ever used our insurance, and so, even though I had known how it all worked, it was still a huge blow and even a surprise when we received this huge bill we could not pay. We immediately changed to an HMO after that. Having never used our insurance, we had no idea how expensive medical care really was. It was a big surprise to say the least. With an HMO you can’t go to any Doctor you want, but to us it didn’t matter that we would have to wait longer or could only go to certain Doctors; at least the bill would mostly get paid for without driving us into a huge debt. Not that it mattered; even with an HMO we would later face bankruptcy over medical bills anyway. We can’t win for losing.
Let me backtrack and see if I can explain my background and my way of seeing things: I grew up in Italy, a country that has had National Health Care since 1947, when the new government was emerging from the rubbles of World War II. After Mussolini was killed, the King of Italy, an old, weak man, upset and embarrassed about the war, abdicated the throne to his son, which in only a few months came to the realization that the population was so upset at the monarchy they demanded a new form of government. Fearing perhaps a revolution, or simply realizing the malcontent, the new King decided to have an election of sort, a national referendum, having people decide if they wanted to continue with the monarchy or have a Republic with a President. When the results came in, a Republic won by a small margin; the Savoia Royal Family was expatriated and representatives of every culture, including Roosevelt’s men and representative of the new Italian Government lent a hand in writing the new Italian constitution, which included such modern and groundbreaking concepts such as Civil Rights, Welfare, Social Security, Right to Vote and Equal Working Rights for Women and yes, National Health Care, all in 1947.
Growing up in Italy I never heard anyone uttering the words “Medical Bills” let alone knowing anyone who had a Bankruptcy over Medical Bills (as I would have later on) because it simply does not happen. In Italy, you’re not forced to keep a job you don’t like for fear of losing your Medical Insurance; there is no Medical Insurance you have to get. If you’re sick, you’re taken care of, if you need a prescription you get it for cheap and you never wonder if you can afford to go the Emergency Room; all of this is simply not part of the Vocabulary. There were instances when, as a youngster, I was really sick and the Doctor would come to our house for a visit, a God sent, since my mom couldn’t drive. My grandmother, too weak to walk down two flights of stairs, always had her Doctor come and visit her, not the other way around. As a child, I had my adenoids taken out, my older sister was hospitalized for a severe tonsil problem, my little sister had appendicitis (taken out by emergency), my parents both had to have surgeries and my grandma went through years of chemotherapy, hospital stays and even surgeries, all without ever hearing the words “co-pay”, “premiums” or “bills”. Yes, it’s true, the taxes are higher, there is a actually a payroll tax that pays just for that, but imagine the freedom of not needing to worry about losing your job, or wondering if you can afford to go to the Doctor, let alone how you’re going to pay premiums, because there are none. Imagine people being free to go to the Doctor when they first get the symptoms, rather than going much later, when it’s more costly to treat and life threatening. In Italy, Health Care is a right, written into Article 32 of the constitution in 1947. Most modern countries have the same. I know and realize the system is not perfect by any means, but it works and I know this because I lived there and I saw it with my own two eyes and experienced it on my own skin.
butterfly_child_cover-copysmall2So… suddenly, after I was slapped in the face by life, I was slapped in the face by the US Medical Insurance industry. This is the first time that I wished I was in Italy and wondered why I left to begin with, and it would not be my last. I do and will always love the United States, and I will until the day I die, I wouldn’t have moved here if I didn’t, but this particular issue was one that started it all for me, one that I was completely unaware of until this particular moment in my life. This would unfortunately be only the first morsel of a gigantic “Medical Insurance” bitter cake I would be forced to eat and swallow for years to come. I cannot wait to tell that story.”

That story, of course, will be part of the book I am currently writing, entitled ‘Butterfly Child‘.  I was initially going to self-publish this book and release it by the end of the year, but after reading similar books by other parents battling with Tay-Sachs disease, Down Syndrome, Autism and the like, I honestly feel my story it’s too important not to seek out a legitimate publisher, one that could spread the word about EB, how these children need a cure, badly, how this orphan disease falls through the cracks in the supposedly richest country in the world. How is it that a nurse was always denied to me, bandages denied to me, respite denied to me, how is it that I can’t get ahead no matter how much I try?

I want my book to make a difference. I know I am only one person, but perhaps, with some support, I can get the right people involved in this project. Anyone knows anyone? Please contact me on my FB page… if you do. I NEED YOUR HELP!!!

Thank You from the bottom of my heart….

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