Share Your Story: Thanks to the Health Care Law...

 This is a very personal issue for me. It’s not abstract. It’s not optional. You see, my youngest son, Woody, has been severely disabled since birth. We knew at the end of the first trimester that he would have significant medical issues. He spent his first 6 weeks of life in the Neonatal Intensive Care Unit. Such a unit costs up to $50,000 per day. It is a staggering sum to start life. Since then, he has been hospitalized dozens of times, and had numerous surgeries. His last unexpected hospitalization over Christmas 2008 was over 30 days long. His surgery was over 11 hours. We estimate the costs of that stay to be in excess of $560,000. Getting true costs are almost impossible, given how hospitals bill, how insurance companies pay, and how these things are reported to us, the consumers. We may never know the full cost.Additionally Woody is fed through a gastronomy tube (G-Tube). He is unable to get any nutrition orally. His food is a special, prescription, liquid diet costing over $1,800 per month. Every month. For life. It will only get more expensive as he grows and requires more.If you’re getting the impression that my medical bills are astronomical, you’re partially right. I am one of the lucky ones. I have coverage through my employer (for now). My insurance company (United Healthcare) does an admirable job of denying claims and refusing payment. Luckily, my son also qualified for Medicaid here in North Carolina -- he had the G-Tube, ventricular shunt tubes in his head, and a tracheostomy so he got in on the “3-Tubes” loophole -- so his out-of-pocket costs are close to zero. But that could change in an instant. North Carolina is considering changing the Medicaid guidelines which would make Woody ineligible, or at the least increase his co-pay to 30% (calculate 30% of that hospital bill I just mentioned and explain to me how I am supposed to come up with that sort of money as a single father of 3 children). Given the slow recovery of the economy, I may lose my job at any time. Either one of those things would mean I lose my insurance, and Woody loses his. If he were to get sick again, I’d lose my house and everything I own or ever hope to own. Before the Affordable Care Act Woody was getting dangerously close to his “lifetime maximum benefit” with United Healthcare at which point they would have refused any more claims for him for the rest of his life. He’s 13, and though no one knows how long he will live, it will certainly be longer than United Healthcare would have covered him under the old system. I still don't know what will happen when he turns 18, as he will not be able to stay on my insurance (he's not going to college) and won't be able to get coverage anywhere else other than Medicaid.In addition, and more frightening, I am uninsurable. With Woody’s history, I could not get insurance on the “Free Market” for any amount of money. Ever. No one will take on a family with a kid that has already cost millions of dollars. He is a pre-existing condition all by himself. The daily struggles to care for Woody are nothing in comparison to the fear that I will one day not be able to pay for the care he needs in order to survive. To be blunt, without insurance to pay for his food, Woody will starve to death. For me, and for my family, this is a life or death struggle. The fear of losing my insurance is a daily nightmare. I cannot move to a different state, as there is no portability of Medicaid and Woody would go to the bottom of the waiting list (did you know that there are over 300,000 people -- mostly kids -- on the waiting list for Medicaid services? I ache for those families who cannot get adequate care and services for their child).I have written to every single Senator and Representative in office. I have met with the staff of my congressional delegations. I have written letters to the editor of my local paper. I am doing everything I can think of to work for healthcare reform. I have been told by various people that I should "have planned ahead for such things" (explain how you plan ahead for the birth of a severely disabled child with multiple medical issues. Should we have aborted? The same people that tell me that are vehemently opposed to abortion under any circumstance); that Woody could get "free care at any emergency room" (this is a myth); that they don't want to have to pay for Woody's medical care. Usually I am told that *my* circumstance is different but that *other* people shouldn't get health coverage. I am continually stunned by the callousness of the responses to real-life problems.Please remember that this is, for some of us, literally a life or death matter. Some of us fight every day just for the daily survival of our children. Fewer of us also fight for hangs in the health insurance system in this country that is driven by profit instead of compassion or care. A system that puts profit over the health and well-being of the citizens of the most prosperous country in the history of mankind is bordering on utter moral bankruptcy, and the (republican) party that insists on supporting the interests of the insurance industry over the needs of the citizens of this country is already morally bankrupt.