Blog · August 20, 2015

Frankly I am Tired of it All…

ecd48d197baadf93ca1b227454025accI grew up in a country where Health Care is a right, not a privilege.

I grew up in a country where my grandma, who suffered from breast cancer for 13 years, was hospitalized numerous times, endured a double mastectomy, chemo, radiation and more, but was not driven to bankruptcy from it, as all her out of pocket expenses were kept to an absolute minimum.

I grew up in a country where my other grandma’s Doctor went to visit her instead of the other way around because she was unable to leave the house as she could not climb down 4 flights of stairs.

I grew up in a country where my sisters received paid maternity leave.

I grew up in a country where my parent’s medications are completely paid for, as they are for all seniors.

I grew up in a country where my mom’s life was saved by their Medical system and there was no co-pay for her 3-month hospital stay.

Unfortunately, I am not there anymore. I am not in Italy. I am in the United States, where National Health Care is deemed awful, while CEO’s extreme salaries are perfectly acceptable while people go bankrupt.

I went bankrupt twice trying to take care of my son’s NECESSITIES. Insurance companies constantly denied bandages for my son, and did so for the first 12 years of his life (read more about my immense struggles in my book Butterfly Child). Luckily National Rehab/McKesson got involved in 2008 and things turned around for us, but after Health Care Reform was implemented, which I fully support (it means my son will never go without health insurance no matter how old he is and there will be no caps among other things… meaning they will not cancel our policy because taking care of Nicky is deemed “too expensive”), the insurance companies decided that, gosh, our CEOs can’t make millions anymore, we must do something to squeeze more money out of the sick.

So, what do they do? Now all “medical equipment”, which includes G-tube supplies, bandages, wheelchairs etc, come with a whopping 30% co-pay. We are extremely lucky that McKesson, who covers the bandages waves the co-pay for EB families (since it would be in the $thousands every single month-and I am far from exaggerating), but that’s not the case for the g-tube supplies. For me to receive the usual monthly shipment of the items NECESSARY to keep Nicky alive, my co-pay amount is close to $300 a month.

I did the math… if $300 is the 30% co-pay, this means that the total cost of the monthly shipment of 30 g-tube bags, 5 extensions and Nutren 2.0 totals $1,000.


If I go on and purchase the Nutren and the supplies outright, it will cost me as much as my co-pay, a little under $300.

What’s the deal?

How can the supplier get away with making an extra $700 profit over my son’s needed things?

I asked them this over the phone. They are a SUPPLIER. This means they buy things in BULK and should be able to offer CHEAPER prices to their customers, not higher, right?
To this she replied: “Sure, that’s how it works for EVERY OTHER business, but not the medical business”.

It’s crystal clear to me that the PROFITS when it comes to Health Care are outrageous and disgusting.

What’s the point of me even getting these items through the supplier if I can get them from Amazon cheaper? Why give them this outrageous profit? Of course I can’t afford the $300 to begin with, so I have to send a ton of emails a month to places that trade supplies etc. Please, make my life harder than it already is, won’t you? Thanks so much. To say I am frustrated and angry is the understatement of the year.

Insurance Companies + Suppliers = Greed Galore

Honestly… I am tired of it all. I am tired of fighting. I’ve been fighting with the insurance companies now for almost 19 years. I don’t see a light at the end of the tunnel. All I see is darkness.

If anyone has any solutions, please let me know. And… yes, if I could move to Italy right now, I would.

Love and Light,






P.S. That’s me in my imaginary Hawaii vacation taking a break from all this crap.