Woody: Without reform, he may starve

by Karoli on August 21, 2009 · 18 comments

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.

  • tracycoyle

    Based on our conversations elsewhere, I think it is important for me to comment. I think it is loving what you are doing for your son. I do not applaud, nor condemn your choice to have Woody rather than abort him – that was a choice I believe you made, a right to choose I affirm. The consequences you accepted.

    At this point, you have fears, worries, concerns. You see the future and it is not pretty – so, you want everyone else to shoulder the burdens, shoulder the consequences of your choices. People do it all the time, it is acceptable, but wrong. Many people, I am certain, support you. That too is their choice.

    But what you fear is not the loss of insurance, but the loss of someone else paying the bills – and therefore becoming solely responsible for Woody's care and expenses. I understand the fear, but why is that my problem? You made the choice – one that for many people and maybe you included – could have been no different. You might be virulently anti-abortion but even if the exact opposite, the choice of bringing Woody into this world was YOURS. Not mine. Not everyone in your community.

    Every medical policy I am aware of has the $1,000,000 (or $2,000,000) lifetime limit. It is a recognition by the insurance companies that NO limit would mean, NO LIMITS. Woody WILL eventually be on Medicare and yes, it will probably mean spending the rest of your days with few assets. No matter when that occurs, it will be traumatic for you and your family. But that is the consequences of your choice and choices. It does not give you the right to demand others assist you in dealing with those consequences.

    You are the best advocate for Woody. I stand up for you in doing everything you can for him. I will also stand against the United States having to change our way of life to pay your bills.

    My brother was not expected to live beyond 30. He died at 43. Muscular dystrophy affected him. He did much more than anyone expected, including bowling, golfing, working and loving. I am sure Woody brings more love and joy than you could ever have imagined – Billy did.

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  • Jennyjinx

    There is no reason anyone in this country, including Woody, should die or suffer because of a health care maximum– or “rationing” as you would have it. Should you decide someday to accept Medicare, I will be paying for your medical bills. I will be paying for the consequences of some choices you've made in your life when you decide that you're old enough for socialized medicine. As you're probably older than I (as the age your brother indicates) then I'll be also paying into Social Security of which you'll no doubt benefit. I will never see a benefit from that.

    Right now I'm doing the same for everyone else on Medicare. I'm paying the taxes and not reaping the benefits. And yet I've never complained. Because I care about the health and welfare of my fellow human beings and don't want to see even the least among us suffer from lack of health care.

    I, for one, will be glad to see this way of life of gone to the past– as every other insufferable, unfair American tradition has been. Our way of life changed many times over the last 2 centuries and it will continue to change. Because that's what the American way of life is. As a citizen of this country I too have a right to have my voice heard and I say that every person, regardless of their health, age, ethnicity, financial ability and/or political ideology deserves free and accessible health care. It is a human right. It is Woody's right, my right and your right. None of us should have to lose because we can't afford the medications and treatments to sustain us.

    I will stand by Woody and his family and EVERYONE else who can't afford insurance. I will stand by their right to get that care. And I will gladly pay a higher tax to make sure that happens. It's nice that you can afford to make these decisions for your own family, but I'll be damned if you make them for mine or anyone else's. Health care is not just for those with the financial resources to buy it. It is a human right.

  • tracycoyle

    “There is no reason anyone in this country, including Woody, should die or suffer because of a health care maximum– or “rationing” as you would have it.”

    No one said this. I didn't. Health care INSURANCE has limits, just like the insurance on your car, or home. There is a limit to the risk the insurance company can reasonably afford to take. Further, Woody won't die or suffer when his parents insurance ends – he will be given care under Medicare – government provided care on our dime. I don't have a problem if states create pools for Woody and others – I object to the federal government changing everyone's system to account for him.

    Health care is not a human right. I know that seems wrong to you, but there is no right to demand goods or services of others for your benefit. That is what a 'health care right' is, a demand upon others to provide you with health care. Where do you think you have a right to another persons service or liberty? You have the right to move from one place to another, you don't have the right to force someone to drive you or give you transportation. Such a position twists the idea of rights into Gordian knots. If you want to speak of moral obligations, fine but right? Sorry, it doesn't exist. Can't exist.

    Finally, if you are willing to pay a higher tax, do so. Right now. There are literally hundreds of organizations that will gladly take your contribution. It is not even important how much you give – but if it is that important to you, GIVE. Go ahead. I despise people that complain they should be paying more in taxes, but then DON'T. If you think you should pay more, do so but don't make ME pay more because you think I SHOULD also. Organize groups to collect 'voluntary tax increases' and pay them to organizations that help families like Woody's.

    I am not much of a traditionalist. I think they are appropriate celebrations of our heritage – but institutionalized, they limit freedoms and liberties. But your position – free and unlimited health care for all limits freedoms and liberties even more. Who should PAY the doctors and nurses? Who should pay the technicians and manufacturers of medical supplies? Who should pay for the utilities and equipment? These things are not free unless you mean to force doctors and nurses to serve without pay? Government pay? Government has no money unless it has taken if from us as individuals.

    In the end, if government provides free and unlimited health care, it has the obligation to impose limits on behavior that are reasonably expected to incur additional health care expenses. It has an obligation to stop smoking to help prevent cancers. It has an obligation to reduce fats, sugars and salts in foods to reduce obesity. Stop nodding your heads. The natural evolution of that idea is to enforce the obligation to prevent the birth of people like Woody because of the extreme cost to the system that is 'preventable'. When government provides a benefit, it has the right and obligation to dictate the terms of that benefit. Read the writings of those that have considered health care as a right and where that leads them when government is the sole provider of that right.

    I appreciate your passion. Work to build systems that support Woody and his family and you will have the support of most Americans. Demand the system be changed to accommodate Woody at the expense of everyone else's liberties, and you can expect a significant push back.

  • Jennyjinx

    First of all, I do donate to charitable organizations that help poor folks get health care. I donate financially to three specifically: the free clinic, the Catholic organization and the National Kidney Foundation. I can't donate millions, of course, but I do what I can. I also refuse receipts for my donations because I don't claim the donations on my taxes. So, you're assuming that I don't do anything when, in fact, that's wrong. You see, I make too much money to qualify for the free clinic and can't use it even though my own health care is rationed, but I still give them money. It's a moral obligation to me.

    Secondly, you act as if the doctors would be doing free work (as the medical personnel at the free clinic do). They wouldn't be. Neither would they be forced to accept patients that would be using the public option. There are very few doctors in my town now that accept Medicare or Medicaid (I live in Ohio, by the way, and there is no “uninsured” safety net like the one you've mentioned in Wisconsin). They opt out. That's their right. That will continue to be their right. Those that opt in will still get paid, perhaps moreso than their contractual reimbursement from the insurance companies (you didn't think they received 100% of their worth from them, did you?). Those details have yet to be hammered out, but I doubt that any doctors will be enslaved or lose their homes for opting in– looking toward countries with nationalized health plans I'm pretty confident I'm right there. However, I've seen doctors retire from their private practices now due to insurance premiums and restrictions. This is better? Believe it or not, there are actually doctors who favor the public option because it would free them from the restraints of the insurance companies and allow them to actually do their jobs. Ever have a doctor tell you that they couldn't do a prescribed medical treatment because the insurance wouldn't cover it? Is that not taking away their liberty and the liberty of the patient?

    Finally, my own liberty is being threatened when people don't have access to health care and my right to be healthy is threatened. People who don't qualify for public plans and can't afford private insurance go to work every day carrying an easily treatable illness. They do so because they can't afford to take off work to go to the doctor whom they can't afford to pay. Not only are they passing that illness on to me and my family but I'm picking up their slack and working that much harder to get their work done. If they call off they could be fired because the boss needs healthy bodies to keep the work flowing. If that person had the public option he might have gone to the doctor and the boss, having retained good employees who haven't abandoned him for bigger firms offering benefits, doesn't suffer because the rest of his workforce remains healthy and productive. Everyone wins.

    When you say “liberty” what you really mean is “wallet”. Because the whole “liberty” thing really makes no sense to me. We live in a society where someone's “liberty” is impeded upon every day by someone. Joe Blow can't run that traffic light because he's in a hurry to get somewhere– but the government funded fire department certainly can. How is that fair to Joe? I mean, sure the fire department is probably putting out a fire at Jane's house, but Joe isn't at liberty to do exactly what that fire engine did. Or maybe Joe wants to shoot his guns off in the middle of town. He's allowed to carry them here, but he'd be arrested if he began shooting it around other people. Joe's liberty to do what he wants has been taken away to the benefit of those around him. But let's do an example where someone chooses to work in a position where their own work would be more beneficial to the recipient than to them: The fireman.

    In my town the firemen get paid. They choose their career, get the training and sign the contract. The government pays them. They go out everyday to save the property and/or life of someone else without reaping any benefits from that– except that pay and the knowledge that they've helped someone. Their very purpose is to help other people and there's no one saying “Hey! What about their liberty! Those people should pay per house to have the fire department come out. And what about me? I'm safe in my home, I don't want to pay the taxes to pay for those firemen!” Why, that would be utterly ridiculous. No one would think to privatize the fire department or the police department. You say that you've heard these arguments before? Well, to me having affordable access to health care is the same as having the police department and the fire department just a 9-1-1 call away. Both services can be supplemented privately by those that can afford it, but both services are also available to those who can't afford to pay them.

    It has an obligation to stop smoking to help prevent cancers. It has an obligation to reduce fats, sugars and salts in foods to reduce obesity. Stop nodding your heads. The natural evolution of that idea is to enforce the obligation to prevent the birth of people like Woody because of the extreme cost to the system that is 'preventable'

    And yet there is no evidence of this happening in other countries such as Canada, England, Sweden, France, etc. That is fear mongering and I suspect that you know better than that. We have available to us means to find out the truths of those kinds of arguments and pushing them forward doesn't benefit your own argument.

    One note regarding insurance: I am opposed to all sectors of the insurance industry as they work now. I think the insurance industry as a whole needs an overhaul and that none of it works as it was originally intended. I don't look at the public option of health care reform as insurance per se, though it is being called that and it's how people recognize it. As such, I still believe that access to health care is indeed a right and it is in the public's best interest to have options from which everyone can benefit.

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  • http://www.drumsnwhistles.com/ Karoli

    In this discussion over liberty and personal choice, it's worth remembering that for many right now in this moment, there is no liberty because there is no choice. Small businesses aren't started. Creative people who might choose self-employment to develop ideas and new industries aren't able to make that choice because the cost is too high. Not the dollar cost, but the risk that they will place their families or homes in jeopardy. It's a leap of faith to step away from an employer and go it alone. Without options for covering the most basic bases, they opt to remain where they are.

    Liberty isn't some kind of amorphous concept. It boils into daily reality — liberty to take risks that are responsible and calculated, availability of choice, availability of a chance to fail or succeed.

    I would think that these concepts are worth more than a passing glance to conservatives and libertarians alike. Arguing for naked risk is a waste of time — even true believers in the market aren't stupid gamblers.

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  • janisinmaryland

    A quick comment to tracycoyle about those lifetime limits of $1-2 million that are part of many (but certainly not all) health insurance plans. They are arbitrary. They are also not mandatory. As a human resources professional, purchasing employer-sponsored health insurance has been one of my responsibilities. While it is true that insurance companies will offer plans that contain lifetime limits, all I ever had to do was tell them to strike that limit from the plan. Insurance companies will do this if it means they can sell to a company with at least 100-200 employees. Smaller companies would probably have a harder time getting the insurance companies to show any flexibility.

    (Sorry – meant this to be brief, but got on a roll….)

    As to the rest of your specious argument regarding choice, you can't honestly contend that all those who struggle to pay for health care are doing so because they made that choice. If so, what about my mother who died of breast cancer? At the time of her diagnosis, she was given 6 months to live. She lived for almost 10 years.. Her care was costly. She owned almost nothing during her final years – not her home or a car, relied on friends and family to help house and feed her, but was at least fortunate enough to qualify for Medicaid. Should her choice have been to die as soon as possible?

    What about Deamonte Driver, who was only 12 years old when he died as a result of an infection that could probably have been avoided if his mother had $80 or insurance or Medicaid (http://tinyurl.com/2a73ku)? Instead, the poor child had a prolonged hospitalization, multiple surgeries – all to no avail, but which cost upward of $250,000.

    What about my cousin who was 17 years old when her car was side-swiped, sending her to a head trauma center where she spent the next 10 weeks in a coma (at a cost of about $10,000 a day) before she eventually died? My aunt and uncle hoped and prayed every day for her recovery. Externally, my cousin looked healthy – as though merely asleep. The doctors gave hope that she would come out of the coma and recover. Tell me, where was the choice here?

    What about my brother-in-law who was diagnosed with Type 1 diabetes (juvenile diabetes) when he was a teenager? He was on the basketball team and in great shape, had no family history. Now he is in his 50s, legally blind, relies on dialysis three times a week and is on a transplant list. He has a young daughter and a life partner who has been with him almost 20 years. Because he depends on various state and federal programs, he can's have any real assets, can't own his home. And he can't marry his partner because then she wouldn't be able to have any assets (she takes care of him and their daughter, works and pays for health insurance for herself and the child). What other choices would you have them make?

    Since I'm using such personal examples, I may as well tell you that I am also one of those who is struggling with health insurance. I was diagnosed with asthma at the age of 3. My mother had asthma. I'm not sure that my parents understood that this would increase the odds of having children with asthma, but they had four children and only one of us has asthma. Should they have made a choice not to have children? Having asthma was certainly not my choice, but I have it anyway. The meds that help me control it cost about $250 a month. My current health insurance only covers $500 a YEAR in prescription meds. I'm now self-employed, my husband's employer doesn't offer health insurance, and this is the only plan available/affordable for us to purchase privately. Our insurance premium increased by 20% after only six months on this plan (we purchased in July and the rates are adjusted in January), despite our having made NO CLAIMS, not even for prescription meds (which I now resort to obtaining through more creative means than through a pharmacy).

    Still not convinced that our health insurance (and therefore healthcare delivery) is broken in this country?

    “I will also stand against the United States having to change our way of life to pay your bills.”
    Our way of life included spending billions and billions of dollars to run two wars of questionable legality for the last eight years. Think how much of a positive difference that money could have made in the lives of so many people who need access to health care.

  • janisinmaryland

    “Health care INSURANCE has limits, just like the insurance on your car, or home. There is a limit to the risk the insurance company can reasonably afford to take.”

    Honestly, just couldn't let this one slide. Are you saying that insurance companies are imposing reasonable limits and simply exercising judicious caution when it comes to “risk”? I guess that's why “Blue Cross praised employees who dropped sick policyholders” (http://articles.latimes.com/2009/jun/17/busines…) and is also why insurance company executives are raking in millions in total compensation (http://www.healthreformwatch.com/2009/05/20/hea…).

  • http://www.drumsnwhistles.com/ Karoli

    You've come to the heart of the problem. Health insurance will always
    be driven by profit and risk minimizing, which is exactly why they
    rewarded those employees. Keep in mind, I wasn't defending it. I was
    simply stating it as fact. Framing this as health insurance reform
    misses the larger issue, which is that health *care* is not a for-
    profit enterprise.

  • tracycoyle

    I want to make a last comment for Jenny and Janis. Both of you have made good points. Rather than address the specifics of the examples you offered, let me state MY position.

    Yes, with few exceptions, we all are the result of our choices. In MANY cases, the extended consequences of those choices were/are almost unknowable. The concept of shared burdens appeals to many, if not most Americans – yes, Conservatives included. But, I specifically, do not believe that the Federal Government should force that shared burden on everyone. There are ways to use the strengths of government to address the issues, AND PEOPLE, that are struggling, wiping the slate clean and creating a gov system is not it.

    Whether you believe it or not, whether you see it or not, is not relevant – a large percent of people DO believe, DO see that government – specifically the Obama Administration wants to do just that, create a single payer system, owned and managed by the Federal Government. I will oppose it, so will many others.

    On insurance. I really do not understand what is clearly some kind of disconnect between what insurance is and does, and what you think it is or does. Insurance is all about risk management – yes, for profit. While there are many, many insurers that are not profit oriented, the process of evaluating risk and pricing products accordingly is very well established. What insurance is NOT, is a cost sharing plan.

    There are many suggestions and recommendations from the Conservative/Right, but they are not single payer or a variation of gov owned and managed health care. Government has created the situation we are in now. 30 years of 'reforms' and government management of Medicare/Medicad have distorted the system grotesquely. More of the same is going to make the system worse, not better. I know you don't agree.

    These are not uninformed positions – I have direct experiences with the issues both of you raise. My brother was born, and died 43 years later, with muscular dystrophy. His medical costs were huge over those years. Between insurance and MDA, he got the care he needed. Victoria – my partner of 15 years – has diabetes (for almost 20 years now). She is legally blind, her foot wound has been open for 20 months as of yesterday, treatment has cost $85k, she has no insurance to speak of. V voted for Obama BECAUSE she wants gov health care – but as an attorney, she is VERY concerned that she is too old, too sick.

    I have a personal stake in my position – I will be taking care of Victoria for a long time, it hasn't changed my stance. Oh, and V is an attorney and I have worked for her for 10 years. We have read the HR 3200.

  • ErezEldon

    She's one of Hollywood's best actresses, it would be impossible to say for certain weather she's acting or not. But if she was really ill, there are no rapid . I guess she really did come to the show because she was afraid to cancel.

  • ErezEldon

    She's one of Hollywood's best actresses, it would be impossible to say for certain weather she's acting or not. But if she was really ill, there are no rapid . I guess she really did come to the show because she was afraid to cancel.

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