My son Gavin, has something called *Primary Immunodeficiency. *This means that his body doesn't produce enough antibodies to fight off infections. What antibodies his body does produce, are defective.
Thankfully, there's a treatment for this life-threatening condition, and it's called IVIG. Gavin receives his IVIG via subcutaneous infusion, directly into his belly, twice a week.
IVIG is essentially donor antibodies. Each vial consists of antibodies from thousands of people. The idea is that the donor antibodies will temporarily replace his own missing or defective ones. These donor antibodies protect him from infection and or illness.
An update for my regular readers.
He had an IVIG infusion yesterday (Tuesday) morning. We had but one issue, and that was it leaked a little bit. Gavin freaked out as per the norm for a situation like this, but he did calm himself down, and we were able to address the issue.
The infusion itself actually went pretty quick. While I didn't time it, I believe it came in under the two-hour mark, which is good. Sometimes it can take two or three times that long.
Having needles sticking in your belly isn't much fun, especially for a special needs kids.
I don't think he had any side effects, at least that I know of. He doesn't always tell us when he's not feeling well after one of these infusions.
He did sleep for a few hours afterward, and that's quite common for him to do. This process takes a lot out of him and by the time it's done, he's exhausted.
After his extended nap, he was up and moving just fine (at least for him).
Lizze and I are so grateful that we haven't had many issues in regards to this procedure being covered by insurance. It's quite literally a life-saving medication, and while I don't know the actual cost, he will need it for the rest of his life.
I have read several places that each IVIG infusion costs thousands of dollars. Gavin receives eight of these a month, and odds are that number will increase over time. This leads me to something I'm very concerned about.
With the new healthcare bill pending, there are proposed cuts to Medicaid in the amount of roughly $800,000,000,000 and as a parent to a child that desperately needs this coverage, I'm rightfully worried. I have no idea if the new bill will impact him in a negative way. I'm praying nothing happens that could jeopardize his coverage under Medicaid.
Obama put into law something to do with ensuring people access to IVIG, but I don't know the details, or if that's on the list of things to be repealed.
If something should happen to Medicaid, and Gavin's no longer covered, or new limits are introduced, his life could very literally be in jeopardy.
I don't want to hear *why should my tax dollars pay for his treatments? *I pay taxes too and have done so for twenty years. I was also a civil servant, who risked his life to save the lives of others. I also was permanently injured on the job as well and ended up losing my career and private insurance.
I know how important coverage is to families like mine, and frankly, I wish more of our tax dollars went to help those in need. This new bill is scary, and while it's yet to be voted on at the time of writing, there's a very dark cloud of uncertainty hanging over the heads of many Americans right now.
Gavin is *not *a number and neither is anyone else who needs healthcare.
The only saving grace at this point is that Gavin's on disability and perhaps that makes a difference, but until we know for sure what's going to happen, I will have this fear pinned somewhere in the back of my mind. I suspect many other parents in situations like mine will be doing the same.
Healthcare is *not *a luxury and shouldn't be treated as such.
