Blog · March 1, 2019

I Will Always Fight For The Health of My Son.

Nicky’s dad sent me a text from the hospital where Nicky is recovered last night and told me that the case worker came in to tell him that the insurances are covering everything 100%. I almost fell flat on my face.

These past couple of months have been truly hard on Nicky, and for our whole family as well. I lost count of all the Emergency Rooms and Doctors we have seen lately, all due to issues arising from his g-tube. We saw local Doctors, Doctors at CHLA and Stanford, all who did little to nothing for him. Finally, out of desperation, Nicky ended up at Lucile Salter Packard Children Hospital, in the care of a team. There is so much to say about that, and I will probably write a complete blog when all is resolved, but what sticks in my mind today is the issue of the insurance companies deciding to take care of my son instead of throwing his family into bankruptcy. It’s huge. It’s monumental.

I cannot give them all the credit, however. It’s not like they do it out of goodness or charity. When we moved to California I made sure he had MediCAL along with normal insurance, and that helped, but it’s only been the past few years that MediCAL is now covering all the co-pays the insurance feels it’s OK to charge us for. I “think” that has to do with the ACA but I am not sure. Either way, things are better for us, and that is something to do be thankful for.

Let’s be clear on this. Co-pays are nothing but a financial disincentive to go see your Doctor. Even if a regular appointment is only $20, it could be $100 for an ER visit, and up to $250 for a daily hospital stay depending on the insurance. If that is not a hindrance on accessing medical care, I don’t know what is. It may be okay for people who rarely go to the Doctor, but for someone that has a chronic illness, it becomes almost an impossible predicament.

The truth is, the billing department doesn’t care if your baby was born with a chronic illness. The medical companies don’t care whether you’re on unpaid medical leave or had to quit your job because your child needs long-term care. It doesn’t matter, you still have to pay. And even with good insurance, the bills add up. This is how I ended up with two bankruptcies, if you add up all the co-pays, plus all the supplies and things the insurance didn’t cover, the bills were in the thousands.

The reason why the costs in the medical field are so high is because patients without insurance seldom can afford to pay for their medical expenses out of pocket, so their cost are absorbed by the doctors and hospitals that treated them. Doctors and hospitals, in turn, raise their rates to cover the expense of caring for patients who aren’t covered or couldn’t pay, which is why you see inflated costs for everything on bills. Insurance companies, confronted with having to cover higher doctor and hospital rates, began trimming coverage and raising price of premiums, deductibles and copayments for people with insurance. As the price of premiums went up, fewer people could afford coverage so more people lost their insurance. And so the vicious cycle continues. This is why the “mandate” was a good thing, but now that it’s gone, we’re back to square one. Fabulous.

For years I was truly embarrassed over our bankruptcy over our mounting medical bills, I kept it a secret and never talked about it to anybody. It took me years to realize that I wasn’t to be shamed, that I was the victim. I was the victim of a system that wasn’t designed for children like Nicky. Insurances are for-profit and a child like Nicky cuts into their profits so they have to find a way to deny and circumvent and apply carefully crafted words into their policies as to screw people like us over. Co-pays are just a way for them to make sure their subscribers do not abuse their insurance.  But for kids like Nicky their services are life or death situations and co-pays become a giant burden. 

I will always fight for the health of my son.

I am a health-care voter.

I will not rest until EB becomes as recognizable and services are offered to families just like they are offered to parents of those with more common conditions.

More about my fight in the book:

Love & Light,