You Can Thank Me Later

On my last post I talked about Insurance Companies and the hell they put me through the past 17+ years. I also explained why they bother me so much-the endless bills they do not pay or refuse to pay when they should, my two bankruptcies, and the simple fact that they are making our life harder than it already is. Having a medically fragile child is not for the meek, you have to be prepared to do and fight things on a normal basis that make you more a nurse than a caring, loving mother. We have to do things no mother should have to do. All I should do is hug my child, soothe, explain and love, but on top of that, I have to change gauze on wounds so nasty they would make any medical student gasp. I remember, as a matter of fact, one particular medical student that after assisting a bandage change of an EB child, changed careers. I don’t know how I do it everyday, I just do it because I love my child, period.

But… I digress. As I said, Nicky’s life and the life of the whole family of an EB child, is severely effected, and this ‘system’ of for-profit insurance is enough to make me vomit.
I read on both of Christopher Reeve books that insurance companies routinely deny claims because… they can. Period. They are FOR PROFIT, they don’t want to pay your claim, their first and foremost responsibility is to the investors. As per Mr. Reeve’s books and his research, only 30% of people denied benefits will appeal it, which means, they can get away with it. Have you tried to fight an insurance company? Good luck. They hire the most expensive lawyers to make sure they win because they don’t want to set a precedent. An EB mom I know fought Medicare to get the Bone Marrow Transplant they needed and they in the end approved it. Do you think she could have fought an Insurance Company to get the BMT if they denied it? Right. Hilarious.

In the book I am writing about my son’s life, I outline my findings talking with people all over the world with kids with the same form of EB as my son, which is the form that needs bandages the most. Virtually any country that had a government system that foots the bill (funded by a payroll deduction like Social Security-they pay no premiums other than that), none of the BS I dealt with existed. None of it. NONE OF IT. You need bandages? You got them. You need a nurse? You got one. Some countries even offered a traveling nurse, so if the child went on vacation anywhere, the nurse went with them. Surgeries? No problem. Some countries even paid for the travel, even if out of their country.

Here I am, in the ‘self-proclaimed’ best country in the world, with the ‘self-proclaimed’ best health care in the world, and I got no bandages, no nurses, every surgery I had to fight for, and wait until you read the run around I got that lasted a year in both occasions to get a throat dilatation as Nicky suffered! I suppose if you tell the people you have the ‘best health care in the world’ you will believe it. But, is it true? I suppose if you are very wealthy it might be, but I will never believe it. The World Health Organization has the US at #37.  My own country of Italy? It’s #2! I believe it too.

Just last year I had two dear friends who believe the hype of the US being #1, told me they would be ‘afraid’ of having any procedure done outside of the US. I laughed. Oh really? When I asked them if they ever LIVED outside of the US, they said ‘no’. Well, I told them, I did, and I have absolutely NO fears. ZERO. I have experience… not only personal, but stories from my own family who currently lives there. I had adenoids taken out as a child. My parents had several surgeries each, as did my sisters and my grandparents and aunts. They never experienced anything being ‘denied’, ever. We never had to ‘wait’ more than you have to wait here, and if they do make you wait is because it’s something minor that ‘can’ wait. The Doctor comes to you if you cannot go to them. There is no ‘drive-through’ deliveries, if any medication is ‘life-saving’ it’s free (no-copay), no huge copays for every day spent at the hospital-my mom stayed at the hospital for a little over a month for complications from a serious infection and zero co-pay. My husband was at the hospital here in the US for his stroke for 5 days and we got a bill for our co-pay for $1,250. In Italy they don’t send you home if they are not 100% sure you’re OK. My friend’s boss in Italy that had a stroke at the same time as my husband got a year of in-home PT with no co-pays. My husband? After three 15 minute sessions we got a bill for $90. Six months later, three 15 minute sessions were $105.  And these visits were not in-home. It’s the co-pays that drove us mostly to bankruptcies. When Nicky was little we spent more than $400 of co-pays each month, without counting the bandages we had to purchase, whose prices were astronomical.

My little advice? Please take your head out of the sand. Stop believing the hype. The US does not have the ‘best health care in the world’. It is such a laugh to me when people think that or have the gulls of saying that to me. If you really think that, please go and live in Europe, Canada, New Zealand, Australia for a while, and you will find out you will much rather pay a payroll deduction and get your health care taken care of, than a huge premium to go through hell dealing with the Insurance Companies. And you can take my word for it. I lived there, I know. Friends from all over the world tell me constantly how they wish we had their system so Nicky’s needs would be taken care. It is what it is. I will continue fighting and spreading the word.