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Woody: Without reform, he may starve

I don’t usually do this, but David has given me permission to post his letter, photos, and video of his son here, and I really want people to read what we’re talking about when we’re talking about health care reform. We all have stories. Some are like mine — routine struggles to pay for health insurance so we don’t lose everything if a catastrophic illness hits. Some are like David’s – where a life hangs in the balance because he has exhausted all remedies available to him. The MOMocrats™ (and I’m officially one of them now) are collecting stories like mine, like yours and like David’s to send to Congress as a message: health care reform is not optional, nor can it be half-hearted.

David’s story isn’t just about Woody. It’s about his wife, and his other two children, about how to provide for one child with a life-threatening chronic condition while balancing the needs of the rest of his family at the same time. It’s about living in a country where we don’t let our people starve, nor do we subject them to health insurance company death panels. Mostly, it’s about why reform isn’t simply a dollars-and-cents decision. It’s what we do. We take care of each other.

August 18, 2009

President Barack Obama
White House
1600 Pennsylvania Ave.
Washington, DC 20500

Dear President Obama,

Thank you for your leadership on Healthcare reform. 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. 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, 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. My company is being acquired by another, and I may lose my job. 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. As it stands, Woody is getting dangerously close to his “lifetime maximum benefit” with United Healthcare at which point they will refuse any more claims for him for the rest of his life. He’s 11, and though no one knows how long he will live, it will certainly be longer than United Healthcare will cover him.

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. 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 have called dozens of Senators and Representatives. 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 beg you not to give up on the public option. While I would prefer a single-payer solution where I would never have to worry about being covered, at least a public option, for now, would fill the gap. Please remember that this is, for some of us, literally a life or death matter.

Sincerely yours,

David XXXX

I want you to meet Woody, to see that he is a child with challenges who is living with joy and silly-kid days. Watch this video. This is why we take care of each other.

Please write your story on your blog and leave a link to it on the MOMocrats™ blog post here — They want to hear all stories, from the dramatic to the everyday, but most of all, they want to hear yours, so they can bring them to the attention of the men and women in Congress who need to make substantive, real reform a reality. You can follow David on Twitter here.

I would also like to make a special appeal to all who oppose abortion but also stand in opposition to health care reform. Some say that you oppose reform because it involves government in choices about your body. This family knew of Woody’s disabilities before he was born. They chose for him to live. That was a moral choice, one that they made freely and without regret. It strikes me that if one supports their choice (and I do), and wants that choice to be what our society honors, the moral imperative is to support this family and Woody. They could have chosen a different path. They did not. We should be applauding them and supporting them, not leaving them to the mercy of political gotcha-grabbing.

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