Blog · March 27, 2017

In the Business of Caring?

I grew up in Italy, so this whole thing about needing “Medical Insurance” is still a bit baffling to me, even though I’ve lived here 2/3 of my life. The more I learn about Health Care in Italy the more I like it. I can’t help but compare what Insurance Companies put me through, forcing me to declare bankruptcy twice over medical bills they refused to pay, with similar circumstances from friends and family in the old continent.

My cousin’s husband who lives in my hometown in Italy, for example, had a stroke late last year. By all accounts it was even worse than what my husband suffered several years ago. But instead of receiving automatic continuous Physical Therapy and help since his stroke, which enabled him to already being able to walk and becoming better and stronger within 4 months with no co-pays, my husband was left to heal without help offered whatsoever. I spent oodles of time making countless phone calls trying to get referrals for Physical Therapy, 3 fifteen minute sessions costing us close to $100, and within a sea of denials and delays, my husband still can “barely” walk without his brace, 8 years later, despite him constantly trying to exercise daily on his own. Think that’s bad? Wait. The insurance now refuses to cover braces, even refuses to fix the old ones. Even though he CANNOT WALK nor WORK without one! Aarrghhh!

In the business of caring?


My own mom spent 3 months in the hospital, the same hospital where I was born, and almost died because of a very rare set of circumstances, one that Dr. House would be scratching his head on. The Doctors performed heroic measures to save her life 16 years ago, flying in medication from everywhere. Her co-pay? Goose Egg. If I was to stay in a hospital for 3 months, at the fabulous co-pay rate of $250 a day, I would be in the hole for $22,000. Thanks Aetna!

Just this past week, as I took my son to the only Doctor in the Western part of this country that can do throat dilatations for adults with RDEB, at registration, the lady informed me there was an “out-of-pocket” expense of over $6,000 for the surgery. “Out of pocket?” I said? I know there were copays before, but only if we had to stay overnight in the hospital. We never had any other charges, and we had this particular surgery done more than a dozen times! “Well”, she said, “Rules & Regulations change yearly, there are now co-pays, out-of-pockets and other fees and charges”. “Swell!”, I said, “what about his MediCAL, can they pick up this tab? They usually pick up what insurance doesn’t cover, including co-pays”. She entered the information in her computer and it came back “Not a covered benefit”. Not a covered benefit? What?
(I am not paying this, BTW, I will fight it, because it’s complete BS. I am waiting for the “bill” to show up at my house before I start my calling and letter-writing campaign. MediCAL has been amazing, I am sure they will cover it once they understand what it is.)

One would think that after 20 years, and 2 bankruptcies I would be used to this hellhole of a place where Insurance companies dictate the life and death of people, but, sorry, it still makes me mad. People tend to forget that insurance companies are FOR PROFIT afterall, and they pay their CEOs exorbitant salaries. Greed abounds.

I know people out there want to vilify the ACA because their premiums are going up and insurance companies are looking far and wide for ways to get every last nickel out of healthy but mostly sick people, increasing co-pays and other things. This is not the fault of Obamacare, which stopped the most appalling problems with insurance companies. Remember lifetime caps? Remember denials for pre-existing conditions? Remember the retroactive cancellation of insurance policies? Remember College students having no insurance? Returning to that is not an option.

All the ACA is, is a set of laws. They didn’t sell you insurance, they are trying to make sure the insurance companies do not discriminate against the sick and that they are FAIR. Yet, when I brought this up to a so-called friend of mine recently, who was vilifying Obamacare, and told her the only way to fix this is not to repeal, but to get even more regulations in place as Hillary wanted to do or to get Medicare for all, she promptly unfriended me without even replying. That’s right, unless you agree with her to *hate* instead of looking for answers and/or solutions, or even trying to understand how things are, you’re not her friend! I find it funny only because it shows how close minded some people really are. On one hand she said she thinks Obamacare takes away from the healthy to give to the sick, which is amusingly an atrocious statement from speaker Ryan (except… that is literally how insurance works, car insurance, house insurance, any insurance!) but she also thinks Medicare for all is an abomination! But it’s not. There are NO premiums with a National Health Care System. Isn’t that cool? Co-pays are also, when present, quite minimal. Yes, taxes are higher. In Italy there is a deduction on your paycheck for that, similar to the Medicare deduction we’re already seeing on our paychecks now. Yet, everyone is covered.

Look, the fact that it’s 2017 and we’re still debating this is crazy. The health of people in this country should come first, not last! This should not be a privilege! My family is scared, and for us, all politics really is personal. For those of us in the disability community, there’s an added layer. I didn’t ask for Nicky to be born with EB, I am just trying to keep him alive and stable. He’s an amazing person!!! Instead, we spend our days changing bandages, fiddling with medications, with needle pokes, blood draws & infusions and we measure milestones with wound healing and high red cell counts. Planning a year from now, a month from now or a week from now isn’t always an option. I make and break plans constantly because my child’s health can turn on a dime. He stays home when others get to play or have a normal life because he can’t move much without major damage.

There is an unfortunate and long history in this country of blaming the poor and the sick for their station in life. Expecting those in poverty or who are chronically ill to “pull themselves up by the bootstraps,” either forgetting or not understanding that many have no boots, it’s not only judgemental about people in situations they know nothing about, but is simply wrong.

As a society, we completely suck at valuing family over money. I can tell you this from the experience of living in two countries. The media and politicians cry about family values all the time, but they allow businesses legislatively to NOT give family leave. I am looked down as a stay-at-home mom all the time! Yet, moms like myself have a very hard time even working part time. Besides, it’s not like I can hire the local 15-year-old kid down the street to babysit. The only person qualified to even watch after my child would need to be an adult with training, and that comes at a cost too. Respite care? Not available to me, I looked it up. Apparently respite is currently not a priority for me according to my county, my state, my country.

So, as I stay silent on facebook about my screams at any mention of budget cuts that can hurt my son, if there was one thing I could tell our President who mocked people with disabilities, is that the life he’s mocking is a hard life, it’s already expensive as it is also time consuming. However, every Trump supporter I talk to seems to have found the mental gymnastics necessary to justify every horrible thing he has done and said. It’s inconceivable to me. My family is already paying a tremendous price for having a child with special needs. It has not just cost us extra money, it has cost us extra time, it has cost us friendships, family time and so much more. We cannot afford any further cuts to our programs and services.

And to anyone in my shoes, please speak up like I do. I am not saying you should get into a political argument with your friends, because that solves NOTHING, but when you see legislative calls to action, when you can sign a petition, make a phone call, write a letter, do it. Our children need for us to be their advocates.

It’s their lives we’re fighting for!

Love & Light,