At the risk of losing Isaac supporters I’m putting it all out there today. ALL OF IT.
If you’ve followed Isaac long enough you remember our fight for Affordable Care, and our support of it. You remember when the Supreme Court had to decide on it and how vocal we were. You remember when Isaac was invited to the White House to sit in the audience as President Obama rolled the ACA out. Our support for affordable, accessible, HUMANE care has never waivered.
I’ve admitted, before Isaac this was not an important issue for me, he opened my eyes. Now I see our community, our friends, our family – and I recognize my need to care for others as I care for myself and my family.
Unless you’ve had your head buried in sand, you know there is a lot of turmoil in our government these days, and a huge fight taking place over “Trumpcare”. I wanted to believe our President when he promised on the campaign trail to keep affordable care and Medicaid, I hoped when he was elected that he would not go back on that promise.
Unfortunately, that promise has been broken, and we are in the fight of our lives. The new proposal seeks to cap Medicaid, and leave millions uninsured. Although pre existing conditions still can’t technically keep an insurance company from insuring a person, they can charge that person more under this “Healthcare” bill.
A few weeks ago Isaac, Elijah and myself spent some time visiting a few Senators offices with an amazing group of kids and their parents to put a face to the problem with this bill. We have since been invited to participate in a round table discussion with Senator Kaine on Monday.
Why are we doing this? Because this is becoming, quite literally – a matter of life or death. Caps on Medicaid would be catastrophic to our family and so many others like ours. Isaac has health insurance, but he also has Medicaid as a secondary insurer.
What does that mean? It means all of the things insurance refused to pay for, Medicaid does. Medications that Isaac has been prescribed that can cost $7000 a refill, that his insurance refuses to pay for, Medicaid pays for. Isaac’s trach makes caring for him a skill. We can’t drop him off to a babysitter or daycare – he has what is known as an unstable airway. Because of that he requires skilled nursing care when one of us isn’t with him. His insurance company does not cover more than 90 days a year of skilled nursing. Guess who pays the rest? Medicaid.
This morning a man I don’t know commented on a social media post shared on Tim Kaine’s facebook page – essentially telling me that if I can’t afford Isaac’s insurance he shouldn’t be alive. He also made a reference to “survival of the fittest”. I realized, so many are misinformed and ignorant to the facts about healthcare and Medicaid. I’m hoping this post fixes some of those misconceptions.
Isaac’s father and I work hard, we sacrifice a lot. We have seen how hard Isaac has fought to stay alive, and we are well aware of the cost of keeping him alive. In his first 15 months of life the cost of keeping him alive was 2 million dollars. He has since undergone 9 additional surgeries (bringing his total to over 20) and had more hospital stays than I could ever count. I have no doubt that he has gone through at least one more lifetime of care.
All of those millions of dollars have helped to keep a pretty amazing little boy going. A little boy who lights up a room with his smile, a little boy who has a devilish sense of humor and loves nothing more than hugs and kisses. He is a little boy who will be entering the second grade this year, and continuing with Cub Scouts.
We will not stop fighting for Isaac’s life – in any arena. If you support us and Isaac please reach out to your Senators (regardless of their support or lack of support for this bill) and let them know.