Last week there was an article in the Salt Lake Tribune, it is about a teenage in Utah County with an eosinophilic disorder (like my boys) whose mother lobbies the government to require insurance companies to pay for the formula to go in the g-tube (like Kyle's). It is very eye opening and can help people to understand the seriousness of this illness--this is not just a food allergy. I was able to get in touch with this mother and I am going to start attending a support group for EGD diseases. I have really been thinking since this article was printed.
If there is nothing else that has gone well for us this year (which there are), it is that we have Medicaid insurance. Obviously, it was never Evan and my plan to be on government assistance. It has been a slap in the face because we want to be self-sufficient. However, Evan's job does not even cover our expenses and to get insurance it would be 1/3 of his income a month, plus the high deductible, and the copays. At school it would cost $5,200 or something like that a year to have the whole family covered and most likely would only cover 80% of our costs.
Medicaid does not cover Evan and I; however, it does cover the boys. It covers them 100%. This is a miracle, especially if you read that article. Kyle's formula for his tube and what he drinks costs $89.99 for a case of 24---he needs 7 cans a day, which is 217 cans, or 10 cases which would be $899.99 a month. There were only 3 cases available on Amazon when I checked. You can't buy it in the store, so this doesn't even include shipping & handling or tax. Luckily his formula is on the cheap side of what he could be taking. Kyle's feeding pump is $2,100. His feeding bags are $120 per month and his bandages for his tube are $148.95 a month.
That is just costs on some of his supplies. In the month of December (a slow month for us), required 2 ER visits for Kyle and 1 for Aiden, 3 surgical clinic visits for Kyle not including a wound care team visit, and both Kyle and Aiden met with an outpatient nutritionist. I also speak with our GI doctor at least every two weeks on the phone. We also filled our regular 5 prescriptions, of which two are a generic of the antacid Prevacid and cost $197.95 per child a month, and we had 6 extra prescriptions either of steroids or antibiotics for infections.
If you think about November with Kyle's surgery and a 4 day hospital stay or last August and first week of September with a small bowel follow thru for Kyle, a colonoscopy/endoscopy for each child, blood tests, poop tests, and sweat tests for each child. I don't receive any bills with Medicaid so I am not sure what the actual cost of any of these things are, but I am fairly certain those colonoscopy/endoscopy costs about $5,000 per child.
Obviously, I understand that if I did have another insurance plan I wouldn't have to pay these costs out right, I would only be paying between 5-20% overall plus deductibles and copays depending on the plan, but that is still a lot more than we pay now and more than we can afford. I also know that they would not count our formula for Kyle as a drug, but a food and would not cover that $899 a month. I desire to be self-sufficient and not be on medicaid, but have Evan's employment offer us insurance. However, I do worry about what that will cost us out of pocket for the kids health issues, but I want to be able to pay for it ourselves at some point without going into debt.
This is in no way a pity party for us---this is a sincere thank you to all the tax payers out there because I know you are the one's paying for my son's medical coverage. I appreciate having the opportunity to be on Medicaid. I don't know what we would do without it. I want you to know your contribution keep my kids in the best health possible and allows Evan and I access to all we need to keep their symptoms managed and them as pain-free as possible. So as you pay your taxes, know these boys love you for it---and more so their mother because I know no one wants to pay taxes. Thank you.