I don't ever write anything about politics but what happened last week in the passing of the AHCA in the house has been weighing heavy on my heart. This is the side of our lives that we don't talk about often, the other side of having a child with a long term illness. Half the fight is the insurance. Our son Liam has a chronic illness that is rarer than most, putting him in a unique category. The words pre-exisiting conditions, annual and lifetime caps and maxes, taking away federal safeguards such as the essential health benefits, and cuts to medicaid are terrifying, especially to families like ours.
When Liam was just a few months old I had to quit my job as a registered nurse to stay home and care for him while trying to navigate the complexities of the healthcare system to ensure he could get the best care possible. When Liam was only 6 months old he was hospitalized for a week which doctors tried to figure out what was going on with his little body. Since that time he has been diagnosed with gasstroesophageal reflux, heart murmur, assymetric crying facies, motor delay, developmental delay, sensory processing disorder, right hemiparesis, gastroparesis, hypoglycemia, jejunostomy tube, and an unknown metabolic condition. While some of these are now resolved for the most part, he has seen cardiologists, neurologists, gastroenterologists, motility specialists, endocrinologists, metabolic specialists, genetics, occupational therapists, physical therapists, feeding specialists, and speech pathologists all to manage and follow Liam's conditions. He has been hospitalized numerous times, had multiple surgeries, ER visits, and countless visits with specialists. As well as MRI's, Feeding tube placements, ultrasounds, lab work, motility testing, genetic testing, and much more. He also currently takes 4 medications multiple times daily, which we get from 2 different pharmacies, just to keep his digestive tract working as best it can. He is also treated multiple times a year for small intentional bacterial overgrowth which requires us to get medications from a compounding pharmacy. His medications at times can be upward of $3,000 a month.
There's also his feeding tube, Liam has gastro-jejunal feeding tube (GJ) which has to be surgically placed every 3-6 months, depending on how well its functioning, and all the medical supplies, pump, and formula that go along with that. His feeding bags cost approximately $30 for each on and he uses one per day. Insurance now only covers 4 y-port extensions which are needed when you have a GJ button type tube to attach the feeding bag to the tube. That means we have to use one for every 7 days and wash and disinfect it everyday and reattach it. We could buy more ourselves but they are not cheap. Along with medication syringes (your only allowed a certain amount each month and they don't even have the ones we need), tape (since Liam is allergic to plastic tape and only has a non reaction to hypafix tape which we purchase ourselves also). All the extra costs that insurance doesn't cover. We also made the decision last summer to change Liam over to an organic vegan formula that doesn't come with the 55 other unnecessary ingredients that standardized formulas come with. It has decreased his symptoms exponentially and as of now is fully covered by our insurance, but not without a fight of course. I know many many families who have not been able to get this formula covered by their insurance which is heartbreaking because I really truly feel it has made a tremendous impact on Liam's health. We fear that will go away also, leaving us to face either $2,000 more a month paying cash for it or go back to a not so great standardized formula that is covered by insurance. Even though he is able to eat now he still receives 100% of his nutrition through his feeding tube and formula by a pump over 16 hours a day.
Liam's healthcare costs in his first 3 years of life have probably exceeded $600,000 (an educated estimate as I haven't added up every single thing). We currently have health insurance through my husbands employer, thankfully, however last year when my husband changed jobs mid year we opted to pay for cobra since we had already met our out of pocket max for the year. If we went with his new employers insurance right away we would have had to start completely over for the year, pay new deductibles and meet the out of pocket max for the second time in one year. Paying for cobra was another added expense but cheaper than starting over knowing that in less than 6 months the cycle would start over for us again. His new employers insurance is not nearly as affordable as his last but it allows to see the specialists that Liam needs to see and get his medications covered. On top of our high monthly premium we have a high deductible ($4500 per person up to $9,000 max) and a ($6500 out of pocket max) which for 2017 we have already met and paid for. And we considered Liam's health in very good condition for the last several months (He hasn't been hospitalized since september except for feeding tube replacements which has never happened to us yet) normally this would have been met by February for us. We have over the years experienced our current healthcare system deny Liam necessary treatments and surgeries in which we had to fight tooth and nail to reverse. Some fights we have lost in which Liam has had to change medications several times because we simply couldn't afford $1100 for a 10 day supply of a certain medication.
The strain of the financial costs of Liam's healthcare, thus far, will affect us for a long while, we also have two other healthy children that we need to be able to take care of. While I am hopeful that there will be changes to the bill in the Senate I am not counting on it and I fear Liam's healthcare costs could increase or even worse they could deny him necessary treatments or testing because they will fall outside the lines of what is considered "covered". Liam's main condition, Gastroparesis, is rare and very misunderstood even by doctors in the medical community so trying to explain it to an insurance company is a joke. And now we are faced with him having an undiagnosed metabolic disease which is even worse in trying to explain to an insurance company why a test or treatment is "necessary" for an unknown disease. We still consider ourselves extremely fortunate to have the resources we need to be able to navigate this whole situation. We have Liam who is a fearless, loving, caring, hilarious, fighting little boy who we treasure each and every day and are so thankful that through all this he can be, for the most part, a curious little 3 year old.
I strongly encourage you to reach out to our senators and share your story or mine if you don't have your own, we need some major revisions to take place.
