|My rockstar tubie!|
Nope this is not a political debate, this is simply the cold hard truth about "our" (aka this family of four's) healthcare.
When Addison and Blake were born, it did not take long for the healthcare bills to pile up. I am positive that by their 3rd week of life I got a EOB from the insurance company showing me what it cost for their first two weeks of life and what we would owe. I felt sick. For the doctors ALONE it was a few hundred THOUSAND, and then we'd have to pay a HUGE chunk of that. Would it be worth every single red penny they could drain from us... absolutely. But could we afford it? Absolutely not. We did not get pregnant thinking we'd have two preemies and large medical bills. There was no way to prepare for this. In total we spent 105 days in the NICU x 2 ... PLUS another 48 days for Addison (in which she underwent surgery). Can you imagine what that would cost?
I don't know how it came up in conversation with the hospital social worker but she referred me to the billing office who was able to help me with paper work for Medical Assistance. I didn't think we would qualify and I was ashamed. Ashamed that I was taking something from people who really needed it. I was in denial that we were one of those families who DID need it. I was mad that it even came to this. PISSED. And shocked when I got a call that we had been approved and they would be covering EVERYTHING that our primary insurance did not cover from the time they were born forward. Relieved because there was help. We weren't going to drown in medical expenses.
Because Addison and Blake were born below a certain birth weight, they automatically qualified for benefits. It had nothing to do with anything else. Simply a weight. We also later learned that in the State of Maryland, Addison would be qualified automatically until age 21 under "Rare Expensive Medical" because of her Cleft Palate. It would cover every surgery she may need for her Cleft Palate, and all of her feeding tube needs, etc... as long as we lived in Maryland. There are not many ( if any) other states that carry that specific program, so she no longer has that coverage.
Now, keep in mind the hubs works FULL TIME... a lot of time 80+ hours a week. He pays over $500 a month for medical benefits for his family, through his employer. Yes, I am grateful for that we have insurance. BUT... and this is a big one. We found out when we moved that.............HIS POLICY DOES NOT COVER ADDISON'S PEDIASURE, AND THAT THE AMOUNT WE'D PAY OOP after they pay for HER FEEDING TUBE SUPPLIES, is in short astronomical.
The representative at the insurance company informed me that according to his policy guidelines set forth by his employer, they do not deem it medically necessary. So the fact that up until we started tube weaning, her team of doctors deemed it medically necessary and made it very clear that there was only one thing that I could put through her feeding tube that would provide her with LIFE SUSTAINING NUTRITION, a certain formula, did not make a darn bit of difference. And it wasn't a matter of "we don't cover this, but we do cover this" it was plain and simple "WE DO NOT COVER ANY NUTRITIONAL FORMULA WHAT SO EVER, in accordance with the employer's provisions." And when I asked about an appeal, said that it was pretty straight forward and highly unlikely that it would be overturned.
So basically my husband busts his behind for this company day in and day out, pays a high premium for insurance and they won't cover "basic medical needs" for his daughter. But if Addison were back on Medical Assistance it would be covered in full. Something seem wrong with this picture? And let me tell you at $9.00 for a six pack of Pediasure (generic brand) that would only last 2 days... it adds up quickly. THIS IS THE SAME INSURANCE COMPANY THAT WILL NOT COVER BLOOD WORK FOR A RARE GENETIC DISORDER THAT THEY ARE TRYING TO RULE OUT FOR ADDISON BECAUSE THERE IS ONLY ONE LAB THAT CURRENTLY PERFORMS THE TEST.
Did you know that we are not alone? There are hundreds, thousands, of other families out there who are in this same situation. Someone in their family has a feeding tube and their private insurance will not cover the associated expenses. News flash the pump, the bags, syringes, replacement buttons...none of them benefit anyone if there is no "safe food" (aka formula or Pediasure) to put through them. And this isn't just an issue for feeding tube kids either. Kids with medically diagnosed weight gain issues (from prematurity, or other GI issues) need high calorie and pricey meal replacements daily to survive. Private insurance doesn't cover it for them either.
The silver lining in this is that we are moving away from tube feeding, but there are many families who cannot. We are hopeful that in the coming days/weeks/months we will be transitioning to WCM (whole cows milk) and cutting out Pediasure all together, but reality is that we might have to keep one serving of Pediasure a day on board for awhile. One is better then three, and we'll do what we have to do. But I cannot bear to imagine the financial impact this would have had on our family if Addison were feeding tube dependent for a much longer period of time.
Why am I sharing this?
Because I think it's worth talking about and something that needs to be brought to the for front. It's the dirty little secret so to speak. This isn't the only flaw with our medical system either, but its one that hits home for us. And I am not pointing fingers either. I also do not claim to know the perfect solution. But I wanted my voice...Addison's voice, to be heard.