The cost of a life...

This is my facebook status from this morning.  It's clearly it's own post and people asked if they could share it, so I'm posting it here.  It's a sort of follow-up to the post I wrote here seven years ago, when the Affordable Care Act was signed into law, and we were so hopeful that it meant we wouldn't have to worry about health coverage again.  Go give that a read if you don't know our journey up to this point.  Then you can see where we are today...

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I just had a sick in the back of my throat moment when I called to check on two of Max's prescriptions - out of the 17 a month he has filled. The new pharmacy tech said it would be around $1,000.00 because she didn't see he had Medicaid as a secondary insurance. . . for two medications.

Max has Colorado Medicaid through a waiver, which looks past our income and has determined that due to his extensive needs related to his disability he requires additional support through Medicaid. We use the medicaid as a secondary insurance. Our primary insurance (which we pay monthly for) picks up what it will, then medicaid picks up the rest.

After I assured her he most definitely has Medicaid as a secondary insurance, she ran the prescriptions again and they were covered 100%.

Two medications, for the first two weeks of the month would cost us $1,000. These aren't even the expensive medicines.

If you've struggled to understand the reaction we've had towards this new administration, and their view of medicaid being an unnecessary expense to be cut, think of who benefits from Medicaid.

Think of Max who will be affected so much. Max is seen in over 10 specialty clinics - just to keep on top of his health. All bill medicaid after they bill insurance.

Think of the thousands of dollars worth of medication we have to give him to stay alive, which are covered by medicaid after our primary insurance pays.

Think of the thousands of dollars worth of durable medical equipment which allows Max to travel from room to room, allows us to safely bathe him, allows us to take him outside of our house, allows him to go on walks, allows him to be out in the community - comfortably, safely, and with dignity.

Think of the thousands of dollars worth of enteral supplies paid for by medicaid which allow us to feed him. Yes, we even rely on medicaid to provide the equipment which allows our son to eat.

Think of me, because my income as Max's CNA is paid for by medicaid. This incredible program saves the state tens of thousands of dollars a year by keeping children out of facilities by allowing parents to be their paid caregivers.

Think of me and Steve going back to sleepless nights because medicaid pays for the nurses who have watched over Max and kept him sleeping and heathy for the past 3 years. Have I mentioned Max didn't have a single hospitalization or cold in the past year? The most stable year of his life to date. We know this is due in large part to his sleeping - such a simple thing.

Think of us, because all of this is more than we're pouting because our side didn't win. It's so, so, so much deeper than that. And it isn't something we're going to "get over".

As always, we will continue to fight until our last breath for him. We are upstanding, tax paying contributors to society who just happened to be the lucky ones who were given a child with extraordinary circumstances. And we feel like we now have a government who won't address those very real fears.