What Color Are the Holes in Your Parachute?

Back in my second introduction on this site, I mentioned that my daughter was born premature at 25 weeks gestation, 735 grams (one pound, ten ounces). As you might imagine, she was extremely medically fragile, and had many complications. She had four surgeries, and stayed in two different hospitals for the first six months of her life (her fifth surgery occurred after she was already home). I am typing on a borrowed laptop for the time being, but if I had access to a scanner I would post the picture that was handed to me as I was being wheeled out of surgery, about a minute after I regained consciousness from general anaesthesia. That Polaroid (taken by the nurses) is probably far more dramatic than I can describe in words, but I will try.

My first thought, other than “yay! she’s alive” (something I knew before they told me—I could tell the way the people around my stretcher were talking to one another, before they addressed me and could tell I was conscious enough to understand conversation), my very first thought upon seeing that photo was how raw she looked. It wasn’t even her physical size that had the most impact—it was her rawness. I had never seen a preemie before, let alone a “micropreemie”. Her skin was translucent—no pigmentation yet. She did not have a fat layer. She was all raw bone and muscle. It was like looking at someone who had been skinned alive. Her legs were darkened, due to the limited blood supply they received from her being footling breech. One leg was the color of liver, the other was even darker. And then came “the speech.”

A good neonatologist has “the speech” down the way a good funk band has the groove—smooth, detailed, all the right notes, the right timbre, the right punches in the rhythm. And my girl, because of the critical condition she was likely to be in, got the best, most experienced neonatologist in the joint. He is a small man, with the smallest hands I’ve ever seen on an adult. Serious demeanor. Thick Indian accent. And he had that speech down like James Brown. He started, “You have a very, very sick baby….” He went on, rapid-fire, in what was to him a familiar litany; he gave her a fifty-fifty chance of survival, and described the complications she had (respiratory distress syndrome, bronchopulmonary dysplasia, patent ductus arteriosis, hyperbilirubinemia), what complications she was likely to have that hadn’t yet been confirmed (intraventricular hemmorrhage, and what grade I-IV), and what complications she could develop during her stay (necrotizing enterocolitis, retinopathy of prematurity, periventricular leukomalacia). He described the current course of treatment, including the names of the medicines being administered. He even described what is known in the NICU as the “honeymoon period”, where the preemie does ok at first, and then crashes hard. He didn’t use the word “crashes”; that was a term I heard later from NICU nurses. He encouraged me to see her often, and told me that despite the sensitivity that preemies have to sound and touch, that she would be soothed by my presence and voice. He left, and the lactation nurse handed me some plastic cones to hold over my breasts while she gave me instructions on how to operate the breast pump.

A couple of weeks later, the honeymoon period ended. Her bowel was perforated, she went into sepsis, acquired the aforementioned NEC and a particularly gruesome complication—Disseminated Intravascular Coagulation, or DIC for short. Known as “Death Is Coming” to experienced medical personnel. I did not know how bad DIC was at the time; when I tell her NICU story to medical people, and tell them she had it, their jaws tend to drop and their eyes bug out. Surviving DIC isn’t the norm. I held her little hand and quietly sang songs to her, mostly Etta James and Koko Taylor, but some vintage Elton John, Rolling Stones, even some Mary J. Blige. Just, whatever I could think of at the time. I told her what sunsets looked like, ‘cuz her pod was facing west, but the windows were too high for her to see. I told her, just in case she was wondering why the light changed during the day as it moved into night. I tried to describe the taste of salsiccia and stuffed shells to her, piping hot rigatoni with rich, spicy sugu and fresh grated parmesan on top. What the wind felt like on the face and in the hair. All the places we would go and see when she got healthy and got outta there. I wanted to give her something to fight for. And just like on that first day, her respiratory and heart rate, and her oxygen saturation rate would improve as I spoke. It was a battle, and at one point a nurse told me point blank that if I was thinking about getting her baptized, perhaps I’d like to call a priest.

And during that time, I thought I was on Family and Medical Leave. After all, I called my employer from the hospital (when I was admitted on bed rest) and asked for it, citing my condition. I called the union hall and asked what paperwork I needed to complete—and found out no one knew. No one had ever asked before. I went home to eat and take a shower before going back to the hospital, and found the pink slip in the mail. Just a pink slip. In an envelope. By itself. No explanation. “Reduction in force” is what it read. And I was madder than a motherfucker. I went out to the hall and was told that it was just a regular layoff, and that I had no recourse, because it says right in the contract that the employer gets to decide who stays and who goes, and what was I mad about anyway, ‘cuz it was just a “reduction in force”, not a firing. At least I’d be able to collect unemployment. I had already done my own research, and had contacted my (union) district’s human rights department, explaining that I was breaking barriers by being the first pregnant electrician, likely to encounter a lot of resistance. Seeing a distinct lack of interest at the hall, I took matters into the capable hands of the Department of Labor. See, I wasn’t concerned about unemployment. What I needed, was health insurance.

Now, here is where I probably ought to explain how health insurance works for most of the building trades. ERISA plans for the building trades have some unique conditions because of the nature of our work, and thus warrant our own mention in the text of FMLA. See, we have something called “bank hours”. Our insurance, or lack thereof, is determined by the number of hours per month that we work. It varies from plan to plan, depending on the general financial health of the particular Health & Welfare Fund; on my particular plan (at that time), a person had to work 160 hours per month to have health insurance, with anything over that amount going into an “hours bank”. The “hours bank” has a maximum of six months’ worth of hours, and its purpose is to be there as a reserve during times of intermittent unemployment. (During the boom-time nineties, when work was plentiful in my area, a person only had to work for 140 hours a month to secure insurance, with the rest going into the hours bank.) With the minimum hours at 160, it was difficult to bank hours to have enough to reserve for the lean times. Also, my plan is “all or nothing”—either everyone in the family has it, or no one. COBRA is a one-size-fits-all. When it comes to bank hours, the FMLA is very clear—the employer is to continue health plan contributions as if the worker was still at work; the worker’s bank hours are not to be used.

And therein lies the rub. I needed that insurance. I knew from my daughter’s condition that she was likely to remain in the hospital past my bank hours. I needed the full twelve weeks of hours that FMLA grants by law. And since I fully qualified for FMLA, and considered it an act of discrimination to be laid off, off I went to the DoL. And it got really ugly. Really, really ugly. But it was quick, just like I needed it to be. And I won my claim—the brokered deal was, I could either have my job back, or I could have the twelve weeks of FMLA. I took the twelve weeks. It had already been that long; and I took the call from my DoL caseworker while I was in the Ronald McDonald House in St. Louis (the CWE—in case you’re familiar with STL).

Yes, she had been sent to St. Louis for her iliostomy takedown (although I didn’t know it at the time, the surgeon who had performed her iliostomy had lost hospital privileges and was under investigation for causing the death of an infant and the near-death of a couple of others—his license was suspended for a time and he was required to obtain substance-abuse treatment. I was told the “edited version”; that the reason for her transfer was that her reattachment surgery was likely to be tricky and needed the experienced hands of a pediatric surgeon, one experienced with premature infants—not a general surgeon. That was also true. How did I discover the background information? From the front page news of the newspaper, months after she was released from the hospital).

Prior to that, I received my first bill from her original hospital. It came after six weeks of treatment—before my daughter was officially listed as being under the insurance plan (see, you have to produce a birth certificate first, and there’s a time lag between when you can obtain the official birth certificate from the state, and the processing of the paperwork with the insurance plan. First, I had to prove that the baby that came out of my body via the fully-paid for emergency c-section, was actually mine. Don’tcha just love bureaucracy? It didn’t include neonatology services, radiology services, pediatric cardiology, respiratory therapists, or even surgery. But it was about $750,000 just the same. Now remember, that was before the hefty insurance discount was applied.

And I laughed. Yes, I laughed. What the hell else could I do? Who the hell did they think was going to be pulling $750,000 out of her ass? Because it sure wasn’t me. At the Ronald McDonald House, I traded war stories with the other parents. Most of the parents there were long-termers—waiting for the call for new organs for their sick children. Everyone had lost their jobs because of their children’s medical crises. At least once. I met folks whose employers couldn’t be bothered to give them a week of time off. I met a family where both parents had hepatitis C (and that ain’t cheap, people); they were waiting for their toddler son to get a lung transplant. People from all over the nation. A nation of isolated medical crises.

“Usual and customary charges.” That’s another pothole in the road. See, oftentimes you will have no idea if your healthcare provider charges above the “usual and customary” if the healthcare provider is not in the PPO plan—which, in an emergency, they may not be. My daughter’s neonatology group was not listed in the PPO plan, even though they were the only providers at the time at the only Level III NICU between Chicago and St. Louis. And they charged what my plan felt was double the “usual and customary”. The term is supposed to refer to charges listed in the industry-standard “Blue Book” or some such hocus-pocus shit. The feet-on-the-ground reality was that (a) my daughter needed a neonatologist, (b) that was my only local choice and (c) she was too medically fragile to transfer to St. Louis prior to her about her fifth month of life (and not that they had any beds, anyway. That’s a real busy place).

“Maximum lifetime benefit” is my favorite, though. My plan had a “maximum lifetime benefit” of one million dollars. Believe it or not, when my girl was released from the hospital, after all the insurance discounts had been applied (not to neonatology, of course—the outliers not in the PPO), she had not yet exceeded the max. Close, but no cigar.

So as you can imagine, I’ve got a certain take on S-CHIP, and the treatment the Frosts have received from the “compassionate conservative” set. Let’s recap, shall we? Here’s the sitch:

  • for almost all of us, insurance comes through employment
  • for almost all of us, COBRA payments are more than we can manage on umemployment benefits
  • even if we have insurance, it comes with a “usual and customary charges” clause
  • even if we have insurance, it comes with a maximum lifetime benefit
  • and if we are unfortunate enough to have a medical condition, it can be literally impossible, at any price, to obtain private health insurance
  • Ok? That is our insurance backdrop. For our international readers, this is health insurance in the United States. Fun, isn’t it? Perhaps I ought to explain the concept of the insurance discount. See, if you have health insurance, your provider negotiates with various local healthcare providers to negotiate them down to accept the lowest possible payment, in exchange for steering customers towards them (i.e., folks in need of medical care—in the United States, they are called “customers” because healthcare isn’t seen as a “need” like food, water and shelter. It is seen as a “want,” like a new car or plasma-screen television. A consumer good). Some plans have PPOs, some HMOs, but it’s roughly the same principle. Negotiate the lowest rates, and steer the sick folks into a particular set of doors. Both for-profit and self-funded nonprofit plans (like my ERISA fund) work that way.

    So, if you have insurance, you will pay less for healthcare than a person without insurance. If you have Medicaid, the providers cannot forward higher charges on to the individual—they have to take what Medicaid pays. However—healthcare providers don’t have to accept Medicaid. If you are poor enough to qualify for Medicaid (which is damn poor—I didn’t qualify while I was on unemployment benefits), you can still be left without a provider (other than the emergency room). Healthcare providers won’t accept people without insurance unless they pay up front—which is beyond the means of almost everyone. Now you know why the emergency room is the preferred provider for the United States.


    Although I had insurance, my daughter received what the “compassionate conservative” set tells us (hisses at us) is “welfare”. Her forms of welfare? WIC (Women’s, Infants and Children, a supplementary food program) while I was on unemployment, as my daughter was on nightly feedings of Pediasure through a g-tube. My insurance (remember those bank hours!) paid for the pump and the bags, but not the Pediasure, as that is considered “food”, and not medically reimbursible (despite being medically necessary due to her medical diagnosis of Failure to Thrive, which stemmed from her partial bowel removal and malabsorption from the necrotizing enterocolitis). WIC paid for the Pediasure (which cost over $200 a month) as it was prescribed by her gastroenterologist, and things like cereal and juice.

    She was also the beneficiary of a federally-mandated (yet state-funded) program—Early Intervention. Early Intervention provided her with speech therapy, occupational therapy, physical therapy, and developmental therapy. The purpose of the program is to provide these interventions during the critical first three years of life, in order to provide children with special needs with the best possible outcomes. “Best possible outcomes” are more likely the earlier in life therapy begins. Because of Early Intervention, you would not know my girl was a preemie if you saw her on the playground—she is slightly taller than average, runs and plays with the same vigor and ability as other kids her age, and speaks clearly (a real concern of mine in those days of speech therapy, as her palate is high and ridged from being ventilated the first two months of her life). This took years, people. She had to be taught how to eat. She had sensory integration issues. She had poor muscle tone and couldn’t hold her head up at seven months of age. Early Intervention enables children like my daughter to reach the same developmental goals as children without those challenges by the time school starts—and barring that, to at least be likely to be “mainstreamed” into the general school population.

    And finally, Early Start, which is basically Head Start without the income requirements. Early Start is for children at high risk for educational delays. Because of her late birthday, she attended two years of Early Start prior to kindergarten.

    Yep, those are forms of welfare. And I am so glad those programs were there. They made a tremendous, lifelong, permanent difference in the life of my child. I could not, and she could not, have done anywhere near as well without benefitting from those programs. And there are millions of families like mine, benefitting from public programs. And their lives are being saved. Their. lives. are being. saved.


    In 2005, I was unemployed for so long, I ran out of both unemployment benefits and health insurance. Luckily, nothing happened.


    There are many myths in These United States (why do I keep wanting to type “Untied” States?). The myth of Individuality reigns above all. The idea that one stands, or falls, all on his or her own. It is at the root of the notorious historical amnesia this country suffers from. It informs racist and sexist beliefs. It distorts the ability of various progressive groups to organize around issues central to the fabric of our lives, let alone form coalitions with other progressive groups to aim towards and achieve justice for All. It is the poison in our well. This ridiculuous notion that we can manage without the assistance of others. (and can I just mention that in the middle of the word “ridiculuous” there is a “culu,” or ass? So that while I can’t prove it, the true etymology of “ridiculuous” probably refers to laughing one’s ass off?)

    We stand on the shoulders of those who went before us. We stand with the help of those who stand with us, whether we are aware of it, or whether we choose to admit it. In the United States, we are taught that we stand “on our own two feet,” as if we weren’t taught how to stand, how to walk. We are supposed to “pull our own bootstraps” regardless of whether we have shoes, or broken laces. Even those of us who are not taught those lessons in our family of origin are affected by them, as the Cult of Individuality permeates the atmosphere outside the front door: in the schools, in the workplace, and especially in the political arena, where the values of Calvinism are given a fuel injection of Ayn Rand. We are told that those who stumble are careless. That they should have planned better. Should have had more savings. Should have foreseen the deluge. Didn’t they know that it was inevitable? That they aren’t among the saved?

    That is what is behind the opposition to S-CHIP. That those currently without a safety net, save that of their own wages and savings, should necessarily suffer. Should declare bankruptcy. It is their destiny. After all, if they were Worthy People, they would be able to come up with the money on their own. They would be able to find a sponsor. Hence, the number of benefit parties, barbecues, chili cook-offs, mostaccioli dinners, and poker runs held at taverns, union halls, churches (temples, masjids), and social clubs throughout the midwest and elsewhere; a desparate attempt to come up with some kind of money, and prove some kind of personal worth in the face of cancer, accidents, heart attacks, strokes, premature birth, job loss and any number of cascading personal crises that don’t tend to arrive alone. Half of all bankruptcies in the United States are due to medical bills.

    What color are the holes in your parachute? The ones that you’ll see when, in a moment of need, you look up?

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    144 comments for “What Color Are the Holes in Your Parachute?

    1. EG
      October 23, 2007 at 12:22 pm

      This was an amazing post. I’ve really been–enjoying seems like the wrong word, but admiring all of your work. Thank you very much.

    2. October 23, 2007 at 12:31 pm

      Why is it that every time I read a story like this an image pops in my head of Any Given Conservative in a Scrooge outfit shouting “If they be like to die they had better do it and decrease the surplus population!”

    3. October 23, 2007 at 12:32 pm

      By the above, of course, I mean to reference the level of compassion they have towards families with sick or dying children…it’s been said before, but why is it that for many Conservatives life is sacred up until the point a baby is born, and then it’s a disposable nuisance?

    4. EG
      October 23, 2007 at 12:37 pm

      Well, you know If a woman is pregnant and seeking an abortion, then obviously she’s incredibly selfish, flouting her natural and God-ordained role, and refusing to consider the needs the others and fulfill her proper destiny.

      But if a woman has a baby, then, hey, it’s just a personal lifestyle choice she’s made, so why should she expect anyone else to help her out?

    5. zuzu
      October 23, 2007 at 12:52 pm

      La Lubu, that was amazing.

      BTW, I’m just gonna add a more tag to the post to shorten the bit on the front page.

    6. October 23, 2007 at 12:54 pm

      The part about singing to your daughter made me get all teary eyed- hell just thinking about it now makes me teary eyed.

      Why do we have to become experts in health care law and labor law just to get what we’re all ready supposed to have? The amount of time you spent fighting for FMLA was time I’m sure that would have been better spent with your daughter. I wonder how much more “productive” we’d all be if we didn’t have to spend so much time fighting for the basics.

    7. October 23, 2007 at 12:57 pm

      Thank you for this post, La Lubu.

    8. Heather
      October 23, 2007 at 1:06 pm

      I totally agree with your post. I did not fully understand insurance until I started working in the business office of a hospital and my mom went through a double mastectomy and cancer treatment without insurance. And then the S-CHIP ordeal. We absolutely NEED universal healthcare. It’s unforgiveable that we treat our own people this way. I have written my senators and congressman time and time again that if you are going to deny healthcare for children and the rest of us, then you need to give it up yourself, well you can imagine what they have to say to that! Insurance companies (and hospital business offices) are nothing but pure evil. Where I work, they like to “pretend” that its all about the patient, however, all they really care about is that their little worker bees bring in the cash, it makes me sick. It’s time for a revolution folks, in more ways than one!

    9. October 23, 2007 at 1:06 pm

      This is why, when I was misinformed about how to fill out my forms to have taxes taken out of my paycheck, I was so upset.

      I’m proud to pay my taxes. This here, this is why.

    10. Betsy
      October 23, 2007 at 1:16 pm

      Wow. Just…wow. This was an incredible post. Thank you and I think the whole damn country should read it.

    11. Daomadan
      October 23, 2007 at 1:50 pm

      Powerful. I’ve been trying to convince some people why we need universal healthcare and I will point them towards this post. Amazing writing, amazing story.

    12. CLD
      October 23, 2007 at 2:04 pm

      Thank you, La Lubu. I’m so happy your little girl is doing so well now. And your post made me get all damn teary-eyed.

    13. botanic
      October 23, 2007 at 2:06 pm

      I’m so sorry; I can’t imagine going through all that you went through, and then receiving a bill for 750 thousand! It must have felt like a bad dream.

      My brother was born at 27 weeks in 1983. Nobody thought he would survive – he was baptised straight away and my parents took a load of pictures of their 2lb first born. He was in the NICU for ages, but he pulled through. He’s now 6ft and healthy. On his 18th birthday my parents sent a picture of him towering over all of us to the ICU that looked after him – we went there with some money they’d raised, and the nurses had stuck it on the wall.

      My parents went through so much, as I’m sure you know, but they were in the UK, so nobody approached them in their time of fear and hope and asked them for money! I’m continually shocked by the idea of a first world nation without socialised health care. I take it for granted that a medical emergency is unlikely to affect me financially; posts like this make me realise how lucky I am.

      I want to wish your daughter the best of luck as she grows.

    14. Buffy
      October 23, 2007 at 2:33 pm

      Thank you for sharing this.

    15. October 23, 2007 at 2:41 pm

      Thank you for this post.

    16. Jae
      October 23, 2007 at 2:43 pm

      This is an amazing post; thank for for sharing it with us. I am so glad that your little girl was able to beat the odds when so many things were against her.

      These kinds of things aren’t supposed to happen in the America we were taught to love, but they happen every, single, day. I fear what will happen to my parents when they get old and can no longer work. Will I make enough money to care for them? What if they need aides or to be in a facility? I hope that I will have more than enough money to provide them with everything, but I know how unlikely that is.

      It is time for a change. This is not the country our ancestors thought they were coming to, and we need to start living up to that ideal.

    17. Dianne
      October 23, 2007 at 2:44 pm

      Your daughter survived DIC? That’s amazing! You must have wonderful genes. Very glad to hear that she’s doing well now.

      I don’t have a personal story to tell, having been blessed with insurance every day of my spoiled, rich person’s life so far, but I recently did a study (not published yet or I’d shamelessly self-promote by linking) of changes in survival of children with leukemia and lymphoma over the past 15 years. Oddly enough, survival in the US, particularly for one type of leukemia, AML, didn’t reach European levels until the late 1990s/early 2000s. This puzzled me for a while, because I wasn’t aware of any changes in treatment that occurred during that time…But S-CHIP was introduced, with little controversy and bipartisan support, in 1997. Hmm…What do you bet me AML survival decreases in the US over the next few years?

      May every person who voted against renewing S-CHIP and especially the person who vetoed it die of preventable illnesses because of lack of insurance. Which they won’t. Because they get socialized medicine. Yep, free healthcare straight from the state, just like they want to deny children. Now, if you’ll excuse me, I have to go explode.

    18. loosely twisted
      October 23, 2007 at 2:50 pm

      Sometimes even the Emergency Room refuses to take you. I am injured and have been for 4 yrs now. I was sent home and told I was fine. I spent a year in bed, I had to have help just to walk and move. I can move better now, but I can’t work. I can’t get disability and I am so far under I will never see the light of day. I already declared bankruptcy once, and I can’t do it again.

      But I have no health insurance, and I believe it’s been too long to fix what was wrong with me to begin with, and I doubt anyone cares anyway. It’s all my own fault right?

      The court thinks so too, they told me I have to pay childsupport 400/mth and I can’t work. Nice huh?

      I had the same hospital stay with my premie twins, 1 month premie but I had the WiC and I had medicaid (thank the gods) The bill just for the hospital NICU was 250,000, but Medicaid covered that, and all the doctor visits and extras. We had insurance, but I was “pre existing” with the pregnancy, My parents paid upfront for my pre-natal visits, and nothing serious happened prior to having them. It was HAVING them that nearly killed all 3 of us. I got my tubes tied because I do not want to ever go through that again. Nor do I wish it on anyone.

      I am all for Universal Health Care, but I doubt we will ever see it in our life time. I so need a back / hip doctor it’s not funny.

      Thank you for writing this, letting people know. Thank you

    19. October 23, 2007 at 2:51 pm

      Wow. Beautiful. I have chills from reading this. Thank you for telling your story.

    20. Jay
      October 23, 2007 at 2:53 pm

      I don’t want to leave without commenting on this incredibly moving post, but I have nothing to add to “thanks”. I’m also crying as I think of you singing to your daughter.

    21. October 23, 2007 at 2:57 pm

      I have to get out of this country. There is no way I’m raising my child in this place.

    22. ekf
      October 23, 2007 at 2:59 pm

      I thank you for this post as well. I’m sorry you and your child had to go through so much, but I’m glad that the resources ended up being available for her to thrive.

      Just as a dumb pedantic comment, though, “ridiculous” does not have a “culu” in it, although it does have a “culo.” Not that it matters to the substance of your post, of course, but just FYI.

    23. Thomas, TSID
      October 23, 2007 at 3:07 pm

      La Lubu, my littlest was later and bigger than yours, but the description of the little red thing with no fat resonated with me. His face was the size of a kitten’s, and he had no ass, just thighs and an anus sticking out like a nozzle.

      Thank you for posting this. Many of us have times when we look over the edge into an abyss. Only the fantastically wealthy or the deluded can convince themselves that they will never fall. We don’t know where we’ll be or what we’ll need.

      (If I never spend another night watching the numbers on a pulse/ox, it will be too soon.)

    24. Caren
      October 23, 2007 at 3:16 pm

      Health insurance is the difference between middle class and the underclass. My husband has worked for small companies and start-ups and been self-employed. I worked for our tiny family firm. Thank God that Gov. Blagojevich believes in insuring all the kids in Illinois, b/c that’s how my daughter got her immunizations.

      My husband has just gotten a job with a large company. Cost for family insurance? $225/month. We’ll get PPO coverage, 90% generic drugs, Vision and Dental including braces.

      For $225. For the whole family.

      My mind boggles. As a singleton, I was laid off and COBRA was $685/month for me alone 10 years ago. Family rates for small companies are still 600-800+/month.

      And here we are paying $225 in pretax dollars…

      People who have always had that luxury have NO IDEA what the rest of the country faces with small company or individual health insurance. Or uninsured. NO idea.

    25. Spatterdash
      October 23, 2007 at 3:18 pm

      That was a great post. Theory is important, but anecdotes really bring the reality home to me.

      I just can’t wrap my head around the idea of ‘welfare’ being a dirty word. How can it be bad to help people? To save lives? How can people be so astonishingly callous as to treat healthcare as a commodity, rather than a right? Boggles the mind, it really does.

      But I’m glad your daughter’s alive. Reading through that, I was not expecting a happy ending.

    26. October 23, 2007 at 3:32 pm

      Wow, La Lubu. Your post left me speechless and teary-eyed. I’m glad your little girl is doing so well, and at the same time, I’m afraid to have kids in a political environment that seems like a forced economic selection process–only the rich (literally) survive.

      In Germany, where I come from, turning a patient in need away, no matter what the financial situation, is a federal crime (a violation of the Good Samarian Act) and carries very very stiff penalties.

    27. October 23, 2007 at 3:33 pm

      Wow, incredible, powerful, moving post hon, one that cuts straight to the core of what is needed in this country.

      And it also speaks to why when I am finished with my studies I am leaving for a country with civilised health care like what I grew up with back home in New Zealand (ie universal nationalised health care).

    28. JoAsakura
      October 23, 2007 at 3:42 pm

      Thank you, La Lubu, for this amazing post. Like alot of the others responding, the thought of you singing to your little one brought tears to my eyes.

      personal tale: even having insurance sometimes doesn’t mean a damn thing. The spouse went in for an operation last year. Less than a week before the operation was scheduled, our insurance company called and said they were NOT going to cover it, even though that had initially approved it. He had waited months to get an appointment, and had to follow a special diet for the two weeks leading up to the surgery. As a result, we are still about $25,000 in the hole from having to pay for everything up front.

    29. meggygurl
      October 23, 2007 at 3:45 pm

      that was amazing, and made me tear up.

      I’m so glad you and your daughter made it out of that alright.

    30. alsojill
      October 23, 2007 at 3:50 pm

      There aren’t really words. I’m so glad you and your daughter pulled through. You’re both fighters. I just wish you didn’t have to be.

      Thank you for sharing this.

    31. alsojill
      October 23, 2007 at 3:52 pm

      One more thing. The singing was touching, but this:

      I told her what sunsets looked like, ‘cuz her pod was facing west, but the windows were too high for her to see. I told her, just in case she was wondering why the light changed during the day as it moved into night. I tried to describe the taste of salsiccia and stuffed shells to her, piping hot rigatoni with rich, spicy sugu and fresh grated parmesan on top. What the wind felt like on the face and in the hair.

      That’s what made me want to cry.

    32. October 23, 2007 at 3:55 pm

      Amazing Amazing post.

    33. October 23, 2007 at 3:56 pm

      La Lubu, thank you so much for writing this.

    34. RnBram
      October 23, 2007 at 4:00 pm

      You wrote “Don’tcha just love bureaucracy?

      First I am glad that things turned out so well, really.

      The worst bureaucracy of all is the government! Nonetheless, you want more of it because it worked for you in one context. Never mind that it entails robbing the very productive people who made and/or used all the techniques and skills that saved your daughter. In the end you are advocating a solution that ‘bites the hand that fed you’.

      Yes, your employer’s insurance programs were abominable, and many services were too, but why? Take a closer look (your readers who loved your post, look too!). Your health care system is a tangle of bureaucratic intervention and legalese. Doctors and hospitals spend forever wrestling with enormously expensive and time consuming paper work for the government. But that is nothing compared to the billions of dollars they must give up in enormously excessive awards in legal cases and in legal expenses. Your legal system in that respect is preposterous on small issues and often very unjust, especially when the litigants sense “deep-pockets”.

      Then there are the incredible delays, thanks to the government’s FDA, in bringing marvelous new drugs and treatments to patients. That too, costs billions of dollars and thousands of lives.

      Instead of fighting the cause of the problems you have experienced you seek a strengthening of their fundamental cause, your government’s further wrecking of health care! Were there an education system that teaches people to look after themselves, a hundred million Americans would be more concerned about what they are getting, would seek the better private solutions and leave those selling cheap and the nasty solutions to crash and burn by their own poor business offerings. Those who break contracts would be suitably sued, and those who don’t would get the eager business support of their customers. They would be more interested in successfully providing the services you want, and you would be more able to pay for them, because you wouldn’t be paying government half your earnings each year.

      In that society, the one Jefferson envisioned, and the one that made America the most economically powerful society in the World with the highest standard of living, the World had its happiest and healthiest citizens. In that society charity, when it was really needed, was far more available, and it came voluntarily. No one was robbing Peter to pay Paul, which is what you are advocating. Peter was far more likely to help Paul voluntarily; for one thing Peter could be richer in that society!

      As a Canadian I have seen what has happened to our health care since it was ‘nationalized’ 27 years ago, It is no accident that people such as yourself have to fly into the United States (no scare quotes) to get health care we just can’t get here, or die while waiting for it. It is no accident that our doctors move to the United States just to be able to practice the best they can for their patients. It is no accident that the Canadian Health Care system has slipped from second place in the world, after America, to thirtieth!!

      Why has it slipped? Whenever an industry is taken over by the government, there is an initial influx of money because it is politically expedient for the politicians, so their action looks great. Then other political matters come to bear on government revenues and “We just don’t have the money to pay for all that.” starts to be heard. And so the decline begins… then services are become less immediate, except for those with connections, and interminably slow for everyone else. Facilities cease to be created, newer treatments and techniques are not ‘covered’ and remain unavailable. Expensive diagnostic systems like MRIs are more easily obtained for pets!!! In time, as expenses climb because medicine is perceived to be ‘free’, demands for more ‘efficient’ management appear as the ‘solution’. Now, in Ontario alone, tens of thousands cannot obtain a family doctor –there were too many doctors the ‘efficiency’ experts said. And on and on it goes.

      Then, you and those who loved your post will by crying, “We didn’t mean this”, just as many are doing now in Canada, and just as did the people in the train wreck in Ayn Rand’s “Atlas Shrugged”.

      The same things happened in New Zealand and England too. Be careful what you ask for, you just might get it.

    35. Donnah
      October 23, 2007 at 4:16 pm

      Touching story, heartbreaking event. I’m glad your daughter is doing well.

      Our health insurance crisis came when my three year old son was diagnosed with leukemia. We were insured through my husband’s work and everything was fine. Until the big hospital and chemo bills started to roll in. With a five year outpatient treatment plan in place, we were hopeful that things would work out and our son would be okay. We devoted our time and energy to making him well.

      So my husband’s employer took him aside a few months after the diagnosis and told him that our medical costs were driving up the rates for everyone else, so it was “time for him to look for another job”.

      We were stunned. That doesn’t even describe it. We were simply devastated. Imagine trying to find a new job while caring for a child fighting cancer. Plus any new job wouldn’t have insurance that would cover his pre-existing condition.

      My son got well, and that will always be the most important thing. But he hasn’t been insured since my husband lost his job; all his medical needs have been paid out of pocket. My husband did find another job, but the benefits are meager.

      There needs to be a way of caring for all of us. Our story isn’t all that rare.

    36. October 23, 2007 at 4:25 pm

      and don’t get me started on being mentally ill and needing therapy beyond “here – take this pill and shut up”.

      thank you for speaking out – may your post be linked throughout the ‘Sphere.

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    38. Kristen from MA
      October 23, 2007 at 4:29 pm

      Wow, thanks for an amazing post. I’m bookmarking it for future reference.

    39. October 23, 2007 at 4:44 pm

      This was an amazing post. Thanks you. I’m so happy your daughter was a fighter. It’s also good for me to read these kinds of stories because I live a very sheltered life and rarely ever think about people who need health insurance. I’m not a spoiled rich kid by any stretch (quite poor in fact) but living in Canada I’ve never once worried about my medical costs. Sure I pay for birth control pills and I buy my own eye glasses. The only ‘bad’ thing that ever happened to me was having my wisdom teeth removed without anesthesia because that was the one thing that wasn’t covered. Other than that I blithely go on my way every day knowing that if I get hit by a car or get a serious illness I’ll be taken care of. I’m so sorry for what others have to go through. This post really opened my eyes and made me count my blessings.

    40. Jae
      October 23, 2007 at 4:45 pm

      Less than a week before the operation was scheduled, our insurance company called and said they were NOT going to cover it, even though that had initially approved it. He had waited months to get an appointment, and had to follow a special diet for the two weeks leading up to the surgery. As a result, we are still about $25,000 in the hole from having to pay for everything up front.

      That’s disgraceful, but sadly common. My father was losing his sight in one eye due to macular degeneration and my parents had to fight tooth and nail for the insurance company to cover his treatment. Nevermind that his doctors said it was his best chance, some suit surfing WebMD decided it wasn’t really needed since, after all, he still had vision in the other eye.

    41. kathy a
      October 23, 2007 at 4:49 pm

      this is such a lovely, powerful post. so glad your daughter is doing well.

      my baby sister was a 2.5 lb. preemie in 1965. they did not live then, but she did. her skin was so thin, they put bandaids on her knees after a few days, because her movements were rubbing the skin off. we did not have insurance, and i have no idea how my parents managed the bills. maybe that’s why we never had enough underwear, and all us kids scrambled for jobs as soon as we could.

      another vote for universal health care.

    42. kathy a
      October 23, 2007 at 5:03 pm

      also, what r@d@r said. i have a bad story about treatment my son needed being approved [albeit with half the cost going to us even under the pitiful plan], and then 6 months later being hit with a “disapproved” letter. (they do this for fun. go fight them.)

      my friend has a much worse story about her sister being uninsurable [despite working steadily and having a stable life] because of a “pre-existing condition” that was treated successfully and had not been a problem for 10 years. my friend’s sister ended up with a different condition requiring a transplant. she could have gotten a transplant if her family had been able to cough up 5 or 6 hundred thousand, cash. i know there are many issues around transplants, but that is just cold. and my friend’s sister had gone 10+ years without reasonable care for the ordinary things, too. i believe she was 48 when she died.

    43. October 23, 2007 at 5:13 pm

      Thank you for this post.

      I never realised what a racket healthcare is until I turned 21 and was no longer covered by the good plans my parents had always had through my father’s work. Suddenly, I’m discovering that because I need health insurance, I can’t get it. This is the most disgusting reversal of how things should work that I can imagine. Because I need medication for my high cholesterol, I can’t get health insurance. Because I was treated for my eating disorder, I can’t get insurance. Because I’m mentally ill, I can’t get insurance.

      I am lucky enough to live in a state with a government-subsidised “insurance pool” for people like me who can’t get regular insurance. It’s run by the same company that turned me down, and costs twice as much (this being why I say it’s a racket). They also haven’t gotten back to me in the month since I mailed in my forms, while I become resigned to the fact that I cannot go to the pharmacy and pick up the medications that doctors have prescribed for me, because they will cost hundreds of dollars.

      I am frightened to think of how much better I have it than many people, when I am going without medical care myself, and praying that nothing serious happens. I can live without my meds, though I’d really rather not, and it’s probably shortening my life. If I am hit by a car, or get appendicitis, I will be fucked. I never had to think about this until I found myself without insurance, and I never had to think that so many people in this supposedly civilized country are living like this all the time. It makes me scared, and sad.

    44. Laurie
      October 23, 2007 at 5:19 pm

      It was the bit about describing sunsets and why the light changed that got me, too. Never doubt that your words had a profound effect on her.

      Can someone please explain again just what it is that is so BAD about “socialized medicine”? Or even just socialism in general? I generally think I’m fairly intelligent, but this one continues to stump me.

    45. October 23, 2007 at 5:29 pm

      This is a strong story and I hope it opens up the eyes of those who just don’t get why children need “public” health care. My son and I are on medical assistance and you’d think we were bank robbers the way some people react to the information. He gets the treatment he needs, and can get the meds that I could NEVER afford for him otherwise. Oh, and because I’m covered too, he has a mom who can afford her therapy and medication and parent better.

      Funding health care is not a game, as you said, these programs enhance and SAVE real lives.

    46. Hawise
      October 23, 2007 at 5:42 pm

      Terrific post, your daughter must be a very strong girl and in that she takes after her mother. Now I have to go thank my parents for moving to Canada, I haven’t done that in a while.

    47. Ghigau
      October 23, 2007 at 6:09 pm

      RnBram, why am I not surprised that you’re an Ayn Rand fan? You can spout all the rhetoric you like, but the statistics speak louder:

      Infant Mortality (2006):
      United States: 7.1/1000
      Canada: 4.7/1000

      Life Expectancy (2006):
      United States: 78.0 years
      Canada: 80.3 years

      Healthcare Spending, per capita (2003):
      United States: $5,711
      Canada: $2,998

      (Statistics from: CIA World Fact Book, WHO, CDC, and the Kaiser Family Foundation.)

      And thank you, La Lubu, for such a moving post.

    48. Glazius
      October 23, 2007 at 6:15 pm


      Just thought you should know. In case you assumed that the US was still at the top of the report where Canada “slipped” to 30th? It wasn’t. It was down in 37th. And that was 7 years ago.

    49. Dianne
      October 23, 2007 at 6:16 pm

      The worst bureaucracy of all is the government!

      Actually, it’s not, at least not in this context. Here’s the thing about government (medicare/medicaid/VA) versus private health insurance from the health care provider point of view:

      Most government bureaucrats don’t give squat. The patient can live or die, you can spend no money or double the national debt, whatever. They get their paperwork they’re happy. That means that they have no incentive to stop you from taking proper care of your patients. No incentive to help, true, but none to make life difficult either. Plus once you learn the forms, you know the forms and they’re all the same. Until the next time someone changes things, of course.

      Private insurance carriers, on the other hand, want to make money. So they want you to do as little as possible and have incentives to put active roadblocks in the way of the patient getting proper care. So getting an approval for a procedure or drug from a private insurance company is utter hell and they block you every step of the way. And because there are a large number of insurers, learning the forms is dam near impossible–there are just too many of them to really know what any given insurer wants at any given moment.

      The free market does a number of things extremely well. But health care isn’t one of them.

    50. car
      October 23, 2007 at 6:34 pm

      Reader’s Digest has an article this month that details the health benefits that members of Congress get. They pay less than $1000 a year for family coverage, covered by tax money, that beats most Americans’ hand over fist. And, of course, the best hospitals are in their network. It makes me more than sick.

    51. Mnemosyne
      October 23, 2007 at 6:43 pm

      Your health care system is a tangle of bureaucratic intervention and legalese. Doctors and hospitals spend forever wrestling with enormously expensive and time consuming paper work for the government.

      This is where I burst out laughing at the troll, because either this is a straight-faced parody of an idiot Randian, or this is someone so stupid I can’t believe that s/he actually managed to turn the computer on by his/herself.

      Seriously, does anyone out there who’s had even a brief encounter with our health care system actually think that the doctor’s offices are spending all of their time trying to get Medicaid and Medicare to pay up, but Tenet and Blue Cross and Aetna and Cigna and PacifiCare and HealthNet all happily pay their bills on time? They can’t even agree on a single system of coding their bills, so doctor’s offices have to hire people to pursue each separate company.

      And “pursue” is the right word — if you get treated, your doctor is lucky to get a dime other than your copay within 6 months of treating you, and a year is not unusual. That’s without them denying any part of the claim.

      I once got into a fight with Aetna over whether or not they would cover an overnight hospitalization. Basically, I told the hospital that I wasn’t going to pay more than my share until Aetna coughed up the money and if they didn’t like it, they should call Aetna. Three registered letters and two years later, Aetna finally paid up.

      But, yes, I’m sure the reason Aetna didn’t pay was because they were working on all of that difficult government paperwork and they just didn’t have time for my claim. Yeah, that’s it.

    52. October 23, 2007 at 6:49 pm

      Thank you so much for this beautiful post. It should be required reading — over and over again — for every legislator who voted against the SCHIP bill.

    53. October 23, 2007 at 7:24 pm

      Actually Mnem- I’ve done health care insurance billing. Medicare and Medicaid are pretty simple- submit it and get paid. Private insurance- submit it 3 or 4 different times withing the specified time frame and maybe get paid part each time.

      The office I worked in had 17 medical billers- 1 for Medicare/ Medicaid and 16 for everything else.

    54. Dianne
      October 23, 2007 at 7:33 pm

      Another hint about private insurers: If they deny you the first time around, just resubmit. Many private insurance companies routinely deny everything the first time around because a certain percentage of people will just give up and pay and a certain percentage of doctors and hospitals will give up and not pursue the issue. So it is worth it to them to try to see if you’re one of those. Don’t be.

    55. Dianne
      October 23, 2007 at 7:37 pm

      If you look up S-CHIP in medline, you’ll find that by almost every criteria measured, it was a rousing success: It resulted in more kids getting routine care, fewer emergency room visits, a reduction in the inequality in health care access between whites and minorities, higher quality of care, and so on. Furthermore, when it was first proposed, it was not controversial and had broad bipartisan support. What happened to change that? Did the Republicans’ little grinch hearts shrink 3 sizes over the past 10 years or what?

    56. ohsohappy
      October 23, 2007 at 7:49 pm

      I couldn’t access the link towards the end about bankruptcy, but I would be willing to bet that a good portion of those who have to declare bankruptcy are people who “did everything right”. Had health insurance, paid for it for years without ever really getting anything back, and then the floor came out from under them.
      But of course, they must have done something to deserve it…

    57. Bitter Scribe
      October 23, 2007 at 7:50 pm

      La Lubu, I’m very sorry for everything you and your daughter had to go through, and I sure hope she’s OK now. At least relatively speaking.

    58. EG
      October 23, 2007 at 7:56 pm

      a hundred million Americans would be more concerned about what they are getting, would seek the better private solutions and leave those selling cheap and the nasty solutions to crash and burn by their own poor business offerings.

      How, precisely? Most of us are stuck with what our employers give us. Are you fantasizing a society in which workers have as much leverage over and power choose among bosses as bosses do among a workers?

      As to the FDA causing deaths by delaying approvals…there are no words. The politicization and slowness of the FDA is certainly problematic, but are you actually arguing for no government regulation, for any old huckster who wants peddling snake oil in bottles that say “Cures Cancer!” on them? I’m sure that wouldn’t cause any deaths at all.

    59. one jewish dyke
      October 23, 2007 at 8:05 pm

      La Lubu – your story is beautiful and heartbreaking, and I’m so glad it has a happy now. I hope your daughter continues to have a great life despite the rough start.

      I hope you will send this essay to every member of Congress, to the president, to that idiot Michelle Malkin, and to just about everyone else on the planet. It should be required reading for every adult.

      I get the pleasure of fighting with my PPO over a few thousand dollars every year but I cannot imagine what this must have been like for you.

      Universal health care would be a great start. I know it’s a pipe dream considering the power of the insurance lobby, but I’m really hoping for single-payer.

    60. October 23, 2007 at 8:14 pm

      Someone I know, she’s the best friend of a close friend, gave birth to her daughter prematurely about 2 1/2 years ago. Her daughter had a multitude of health issues and spent six months in the NICU. She’s undergone half a dozen surgeries. She is still fed by a feeding tube. She’s just undergone her most recent surgery to have a metal rod put in her spine to straighten her out.

      Her parents have struggled, as all parents would struggle. They fear for her helath, they are exhausted, they try to ensure her older sister gets her fair share of their attention. They work full-time. They rely on grandparents for day to day care. They spend a lot of time in the E.R.

      They’ve never seen a medical bill. They live in Canada. In a province not considered to be well off or have a lot of resources. But they get everything the medical community can give them because that’s just how it is. Money has never been a concern. They will never worry about losing their house. All their worries are focused on their daughter’s health and well being.

      As it should be.

      I’m really glad to know your daughter got all the care she needed. I’m really angry that you didn’t get the care that you needed.

    61. Jenn
      October 23, 2007 at 8:35 pm

      La Lubu: I can’t even find words. I’m just sitting here in tears. As Kathy said above, this should be required reading for every member of Congress who voted against SCHIP and refuses to consider universal healthcare.

      Blessings and light to you and your daughter.

    62. gaia
      October 23, 2007 at 9:25 pm

      Mnem – I’ve had my credit score lowered fairly significantly because there’s a medical collections on it. It’s a paid collections. I didn’t pay it, I never saw a bill from it. It’s because my insurance sat on it for 6 months and the doctor, instead of, oh say, sending it to me, turned it over for collections. At that point, the insurance finally paid it.

      So, it’s paid. Which means good luck getting it off your credit report.

      But the baby is now 7.25, it should drop off around christmas. And then my credit score should be as good as Mr. Gaia’s (which is considered “excellent”).

      And it should be stated that in the US your credit score affects EVERYTHING. You have poor credit – you pay more for car insurance. You have poor credit – you pay higher rates for an auto loan. You have poor credit – you don’t qualify for good rates on a credit card, or even a credit card at all. You have poor credit – you can’t get utilities without a HUGE deposit, your rent increases (if you can get a rental) and you may not get the job you applied for. A collections on your credit report can result in paying well over $500/month more for “regular” expenses. Luckily for us, the collections was only on my credit report and not Mr. Gaia’s.

    63. October 23, 2007 at 9:43 pm

      As a Canadian I have seen what has happened to our health care since it was ‘nationalized’ 27 years ago, It is no accident that people such as yourself have to fly into the United States (no scare quotes) to get health care we just can’t get here,

      Tch. Now we can tell the troll is lying. Canadians could have a US-style system in a minute if they wanted to, but funnily, they don’t. Gosh. Wonder why that is? How come all those Canadians (most of whom could DRIVE to the US, moron) don’t demand a feed-the-insurance-companies system like those pampered Americans?

    64. zuzu
      October 23, 2007 at 10:12 pm

      I couldn’t access the link towards the end about bankruptcy, but I would be willing to bet that a good portion of those who have to declare bankruptcy are people who “did everything right”. Had health insurance, paid for it for years without ever really getting anything back, and then the floor came out from under them.

      Elizabeth Warren from Harvard did a study of the reasons that people go bankrupt, and the single biggest reason, probably a majority, was due to medical expenses. And well over half of those were people who *had* health insurance.

      I almost didn’t approve RnBram, but then I figured, what the hell. Might as well let the commentariat have a shot.

      Not to mention, nobody who hasn’t had to worry a day in their lives about health care can possibly idealize the American system. I suppose RnBram springs from the same well as Mark Steyn or the stalker Rachel Marsden.

    65. Jodie
      October 23, 2007 at 10:35 pm

      I’m an RN. I’ve worked in several different areas, from children with genetic disorders to adults with cancer. Our insurance system is broken, and has been broken for a very long time. Everyone I know who works in healthcare believes we need universal care. We see too many people who can’t be served or who can’t be served in a timely manner. Do you have any idea how insurance companies drag their feet when a person with cancer needs treatment in a timely manner…and then, it’s too late; the tumor’s grown too big.

    66. Retired Veteran
      October 23, 2007 at 10:40 pm

      Retired disabled veterans go through this from retirement or discharge, until death.

      Each and every time we are placed into a hospital by the VA, and we are uninsurable, uninsured, the hospital sends us a ‘non-negotiated’ bill!

      Three days with pneumonia runs $15,000. Two days with gall bladder surgery runs $49,997.

      We submit it to VA ‘Means Testing’, and two years later they might look at it, but, meanwhile, the Veteran’s credit is ruined.

      Veterans secured your freedoms, America.

      You promised us care, but, only for the immediate war connected injury, that made us unfit for any employment that would entitle us to insurance!

      So, without any healthcare insurance, we expire in debt, like tossed out garbage. We followed all orders, and ‘took the hill’! But, we are unable to purchase a plot on that hill.

    67. October 23, 2007 at 11:17 pm

      Our Randian friend forgets to mention that those Canadians who fly to the USA to get treatment are basically the richest of the rich, so they’re getting treatment in the USA that is not available to most American citizens. So he’s comparing apples to oranges.

      Canada has decent healthcare for all.
      USA has dismal health care for most, excellent for the few.

      It’s no surprise then that those that can afford it would rather have the excellent healthcare available only to the very few in the USA rather than the ‘merely’ decent Canadian healthcare. They’re leeches, nothing more.

    68. October 23, 2007 at 11:49 pm

      …wow. just, wow.

      and yeah, the “compassionate conservative” schtick, never mind “pro-life,” when put up against stark evidence of reality like this, never ceases to amaze me.

    69. Lauren
      October 23, 2007 at 11:54 pm

      Wonderfully written. It’s posts like this that make me think “what can I do to help facilitate change in our country?’ Thank you for sharing your story.

    70. Interrobang
      October 24, 2007 at 12:06 am

      The troll is lying. In the Romanow Report on healthcare, 95% of Canadians said they were happy with our healthcare system, and a substantial plurality said they’d be willing to pay more tax to increase it. So never mind being a “30% dead-ender,” he’s a five percent dead-ender. For what it’s worth, the CMAJ published a huge metastudy showing that for-profit hospitals increase mortality across the board. In this case, we can define “huge” as “[f]ifteen observational studies, involving more than 26 000 hospitals and 38 million patients.”

      Tommy Douglas, the “Father of Medicare,” was voted Greatest Canadian in a CBC contest in November 2004.

      I was a 2 pound 2 oz. preemie in 1975. I am lucky — not only did I make it out alive (albeit not without permanent effects — I have cerebral palsy), but my parents had the good fortune to live in post-Tommy Douglas Canada. Even my relatively wealthy parents would have been snowed under by the amount of medical intervention I needed and received, everything from acute hospital care to physiotherapy and occupational therapy.

    71. zuzu
      October 24, 2007 at 12:20 am

      Can you say “Fraser Institute”? I knew you could.

    72. KB
      October 24, 2007 at 12:21 am

      Thank you so much for sharing your story. I’m so glad that things worked out for your daughter.

      As a military dependent, I am in a universal health care system. It’s not a perfect system. The wait to see a specialist can be very frustrating and the lack of civilian doctors who accept our insurance is problematic. The mental health coverage is especially lacking for those with serious, long term issues.

      However, we’re never going to go bankrupt from medical bills. We don’t have to chose between paying for food or medication. It provides us with a great deal of comfort to know that becoming sick is not a financial emergency.

      I do advocate for change within the military dependent health care system but never for change that would leave even one of us without insurance. That’s just too high of a price to pay.

    73. Ursula
      October 24, 2007 at 12:41 am

      America …Land of Economic Rape

    74. Marissa
      October 24, 2007 at 1:33 am

      Jodie’s comment about insurance denying the ok fore treatment untill it is too late makes me especially sad. Why the hell can’t we have universal healthcare? And what happened to the basic notion of preventative care?
      I sware, sometimes it seems like these conservatives running our country stand for everything horrible and cruel in this world.

    75. Dana
      October 24, 2007 at 4:15 am

      This is incredibly depressing. I live in NZ. We have “universal” healthcare – nothing like Europe where GP visits are free or even Canada where you can get a free personalised mouthguard from your dentist. :D

      But hospitalisation is free, surgery has huge waiting lists and we are short of specialists but it’s free, birth including (especially!) complications is free.

      It’s inconceivable to me that your system can be that bad. Really really really that unbelievably awful.

      Conservatives in NZ want less taxes and more privatisation and all I can do is scream “WHY?!” People want $1k in the pocket at the end of the year, but… more healthcare? Better schools? Where the fuck do these people think the money comes from?????

      That was incredible and moving. Thank you.

    76. Aphie
      October 24, 2007 at 5:27 am

      Argh, pregnancy hormones and the weepies at the description of your poor daughter! The more I learn about the American health and social aid system, the more grateful I REALLY am that I live in Australia.
      Although I too would have to turn to charity in the extreme case of a child with the birth complications of your daughter’s, in the course of a normal pregnancy I expect to pay $50 for antenatal classes before I go to the hospital for labour, with a team of local midwives whom I will have met and consulted with for the last few months of my pregnancy. I may incur incidental bills somewhere along the way, but I really don’t expect that to be the case.

      Our government is pushing, more and more, to have a system like America’s. But we still have basic healthcare for every Australian – with attendant paperwork and remote area problems and complications, but still so,so much more than what the average American can expect.
      What happens in America is important for Australia – in you we see our future, the way that our current political landscape is forming. I wonder if my child will be able to expect the same sort of birth as me, or if the birth of my eventual grandchildren will be more akin to your experience.

    77. October 24, 2007 at 6:55 am

      the last thing i want to do while insomniatic is cry my eyes out! but it was so worth it! thank-you for this incredible post! our health care system makes me sick…except that i can’t afford to get sick…

      as someone about to go from the universal health care of the military into the hands of the VA, i am afraid. universal isn’t perfect…but it’s something. soon, something that leaves me unfit for duty will mean i can’t ever get insurance…something that was caused by duty…and i am only 27! that isn’t even including what i am going to do for my daughter…who is my dependant. as the vet said above…people in this country (especially people like that vet!) are being tossed aside like garbage.

      who posted the george carlin clip last week, about pre-born = good to go and pre-school = fuck you? hits it on the head…

      i want to send this to everyone i can think of…

      people who are so anti universal health care/anti SCHIP- exactly how do you propose that everyone get health care?
      and by your standards…how do we choose who should be left behind?

      thank-you la lubu. best post i have read on this topic in a long time…maybe ever!

    78. CatherineJay
      October 24, 2007 at 7:11 am

      I don’t usually have the time, energy or inclination to read such lengthy posts, particularly when they pertain to such emotive issues because frankly I don’t have the strength to get revved up at every turn.

      I’m really glad I took the time to read your piece today, aside from being amazingly well written and researched you highlighted what I considered to be a crucial part of the need for universal healthcare. Everyone is born and everybody dies and nothing is a given in between, life is a random lottery and everyone should be able to be as healthy as possible.

    79. October 24, 2007 at 7:20 am

      Simply wow….

      I’m Australian and absolutely can barely begin to understand the obstacles and issues faced over there.

      Our own system is broken enough – but it’s not yet as bad as that, and I sincerely hope it doesn’t go that way either.

      Thank you so much for sharing in a way that made it very understandable for those of us not living in the US.

    80. La Lubu
      October 24, 2007 at 7:36 am

      Thank you all for the kind words.

    81. October 24, 2007 at 7:42 am

      My coworker is 100 percent against universal health insurance (because she had a bad experience in Canada with her son needing stitches on vacation – sounds more like “Bad Service” than it does Canada Healthcare Sucks, but …), and was for the SCHIP veto (not against SCHIP per se, just the increase … I did, however, explain to her that $80K/year in our neck of the woods may be a lot, but in a lot of other areas – i.e., NYC – it’s chump change).

      However, in the same breath that she tells me this, she tells me about how she’s horrified that her friend, who is married with two kids, and works for a corporate HMO, was told by her employer – IN THE HEALTHCARE INDUSTRY – that they will now only cover two people on the healthcare plan. As in, either her and one dependent, or two dependents and not her. No more. Fortunately, her husband has health insurance at his job, so they came away relatively unscathed.

      However, I want to know ON WHAT PLANET that policy is A Good Idea. I also want to know how it is that even acknowledging that this is Bad Bad Bad, people can still be against public health insurance programs for the middle class.

    82. Kitty
      October 24, 2007 at 8:05 am

      irisira, I was really upset to learn that families making $80K/year would only be eligible for S-CHIP coverage in one state – New Jersey – and only because that state requested it from President Bush and he specifically approved it. Okay, let me say that again. The $80K/year thing that people are so worked up over? Was individually and specifically approved by the president.

      Currently, New Jersey’s FamilyCare program covers families earning 3.5 times the Federal poverty level, which includes children in families with incomes of $72,000 a year. It was grandfathered in to the Senate S-CHIP bill.

      The people who are using this point to undermine S-CHIP are either disingenuous or dangerously ignorant.

    83. October 24, 2007 at 8:06 am

      The myth of Individuality reigns above all. The idea that one stands, or falls, all on his or her own. It is at the root of the notorious historical amnesia this country suffers from. It informs racist and sexist beliefs. It distorts the ability of various progressive groups to organize around issues central to the fabric of our lives, let alone form coalitions with other progressive groups to aim towards and achieve justice for All. It is the poison in our well.


      I think this myth is also a major cause of our unhappiness. We are so, so, so very wealthy as a nation, yet also so very, very sad.

    84. Kat
      October 24, 2007 at 8:37 am

      This is an amazing post. I think so many people who think they are insured (they are employed, their company has a plan, they pay their premiums… so they are covered, right?) don’t realize that they are just one catastrophic medical event away from financial ruin.

    85. ElleBeMe
      October 24, 2007 at 9:09 am

      Excellent post. It reminds me of when I had my first job.

      My first real job was when I was in grad school. I part-timed at a factory in their HR department. I have personally seen the destruction that medical bills and costs can do to a person’s life.

      I remember it was open enrollment. Many of the factory workers were making $6-$8/hour. During open enrollment I remember one older gentleman opting out of medical insurance altogether. My boss and I pleaded with him to keep it. But considering it was Buffalo, NY in December and a heating bill needed to be paid – along with rent, food, misc. his weekly wage didn’t add up to much. Having teh health insurance was too much for him to sacrifice when bills needed to be paid. Well, we couldn’t force him to be covered so off the insurance he went.

      In January he was involved in a car accident and stayed overnight at the hospital. A couple weeks later a letter arrived from the Sheriff’s office stating his wages had to be garnished to pay for a $17,000 medical bill – and the garnishing was more than what he originally opted out fo paying for medical insurance.

      When I moved to the DC area and had no job or insurance – I got a bladder infection. Being barely able to pay rent, nearly having my car repoed and eating the leftovers of a kind roomate who saw my plight – I got a bladder infection. Instead of going to the MD I bought a pack of uristat pills and a bottle of ibuprofen. Thankfully the infection went away on its own. But I really gambled there with my health. Had it spread to my kidneys my story today would have been a lot different.

      Universal healthcare is the solution.

      The problem is the PPO’s and HMO’s. They don’t want to lose business….and they have the money to lobby for the status quo.

    86. October 24, 2007 at 11:01 am

      I’ve seen this issue from both sides…my father is a doctor and a good friend of mine is a pediatrician. However, I’ve also seen and experienced some of the bad sides of the current system – if one can call the Rube Goldberg mess we have a “system.” Nothing, of course, like the harrowing story above…

      Conservatives hold up private-sector solutions as the ideal, evoking the “old country doctor” model of how non-Governmental health care will work. They contrast it with the “awful lines and poor service” of Government-managed health care systems – note the frequent use of “socialized medicine” to evoke Stalinesque famine and want, poor babushkas in line for bread and a doctor’s visit.

      The reality is that we don’t have a “free market” system of health care. What we have is health care by insurance agencies. Insurance agencies make their money by NOT paying claims. Look at the aftermath of Katrina; the insurance companies were most concerned with reducing payouts, not giving homeless people money to rebuild their lives or property. It’s perfectly logical, perfectly capitalistic, for the insurance companies not to want to pay out.

      Likewise for health insurance; they want to collect money from healthy individuals and deny it to sick ones. That’s how profits are made. They create bushels of exacting procedures and paperwork, a bureaucratic maze, to ensure that every possible penny stays in their pockets and not in the patient’s. A bureaucracy exists to prevent service, not provide it.

      In the meantime doctors and nurses face increasingly smaller paychecks. I’m not talking about “rock stars” like neurosurgeons or cardiac specialists, but pediatricians and G.P.s. The friend I mentioned above hasn’t gotten a decent raise in years, and some years even pay cuts…and the HMO he works for just finished a new administrative headquarters building for all of the HMO insurance staffers.

      Insurance companies serve their shareholders, not their patients or doctors. They have the profitability and deep pockets to ensure political clout and to ensure the status quo in Washington. They set the pricing structures; an uninsured patient is not facing a true free-market-set pricing system where his or her bottle of pills is going to cost what it costs anyone else, but rather a sliding scale based on what the insurance companies will pay out. This distorts the pricing structure so that someone without insurance pays far too much and someone lucky enough to be in a good HMO system pays far too little.

      Say what you will about the ills of “socialized” medicine, what we have is an insane distortion controlled by a few hegemonic – may I even suggest monopolistic or cartel-controlled – companies which serve none but their owners. We’d be far better off in a “true” free-market system or full Governmental health care. In this case, a true believer in the free market should agree that health care is a common good, not an individual market decision; like police, firefighters, roads, sewers, highways, and the rest, basic medical care should perhaps be viewed as something which falls under the purview and powers of Government and not fully under that of private concerns.

      Mind you, given the current mania for outsourcing Governmental responsibilities – I give you the mercenary soldiers in Iraq as an example – the current administration might not agree. However, something’s got to change, and soon.

    87. October 24, 2007 at 11:13 am

      What’s sad and funny is that we are the richest country in the world. The richest country in the world – and this is what our riches have bought us.

      Thank you for your post, La Lubu.

    88. October 24, 2007 at 11:23 am

      Even those of us who are not taught those lessons in our family of origin are affected by them, as the Cult of Individuality permeates the atmosphere outside the front door: in the schools, in the workplace, and especially in the political arena, where the values of Calvinism are given a fuel injection of Ayn Rand.

      This sentence is brilliance. Just wanted to say so.

      I keep wondering why I find certain ideas in my consciousness that I was NOT raised with, and thank you for explaining.

    89. Christina
      October 24, 2007 at 11:51 am

      I have a dear friend who was denied health insurance because she had a preexisting condition – ACNE.

      Your post was so moving, and (along with my friend) inspired me to become more active and aware of this crisis. I have always been lucky enough to have health insurance (though incredibly limited, as it is from the military and almost impossible to navigate. But at least it is there. But that’s another story for another time)

      I can’t imagine if I didn’t have it

    90. Mnemosyne
      October 24, 2007 at 1:12 pm

      Actually Mnem- I’ve done health care insurance billing. Medicare and Medicaid are pretty simple- submit it and get paid. Private insurance- submit it 3 or 4 different times withing the specified time frame and maybe get paid part each time.

      The office I worked in had 17 medical billers- 1 for Medicare/ Medicaid and 16 for everything else.

      Sorry, I may not have been clear — I was mocking the notion that our healthcare system is bogged down with government paperwork, when everyone who’s had even the slightest brush knows it’s the private insurers who are mucking things up. Medicare and Medicaid may not pay much, but they usually pay on time.

    91. October 24, 2007 at 1:34 pm

      3/4 of the way through your post I found myself trying not to be sick. My kids are on a state health insurance plan. My second child was born overseas after a terrible experience I had birthing my first in California. As of November I won’t even have state insurance because I’ll be “making too much money” (still below the poverty level and barely able to pay rent, but hey, at least the kids will still be insured).

      Things need to change. The US system can’t keep treating people like customers, driving families into unimaginable and unreasonable debt. Socialized medicine isn’t perfect, but my kids and I still have our National Health Insurance cards should we ever return to the UK and need care. It’s not much to fall back on, but as I am my own employer, I don’t see how I will be able to be insured otherwise.

    92. Sailorman
      October 24, 2007 at 1:56 pm

      This is an outstanding post; I am glad that you and your child are OK.

      Ironically though, the type of extremely costly, relatively low success rate, high-intervention, high-technology treatment that you describe here is fairly difficult to provide without rationing or other rationing-controlled mechanisms, in a more socialized system. The U.S. doesn’t do a good job of providing basic medical care to its citizens. But as it happens, the U.S. does a very good job of treating extremely premature infants like yours. (Of course, it does a shitty job of making sure they don’t starve to death once they leave. And so on.)

      That doesn’t affect your conclusion (socialization of medicine is an overall benefit anyway.) But it is an important footnote.

    93. Mnemosyne
      October 24, 2007 at 2:38 pm

      Ironically though, the type of extremely costly, relatively low success rate, high-intervention, high-technology treatment that you describe here is fairly difficult to provide without rationing or other rationing-controlled mechanisms, in a more socialized system.

      Even more ironically, the socialized systems have much lower rates of premature birth and low birthweight babies.

      In other words, if we had a more socialized system, we would have fewer premature babies that need this kind of intervention in the first place.

      But that’s how our system works — we’d rather do expensive heroic interventions after the problem occurs than prevent the problem from occurring in the first place.

    94. October 24, 2007 at 4:36 pm

      Kitty – I don’t disagree. People are so incredibly misinformed about this. They’re also misinformed about the price tag, as insuring children is the LEAST EXPENSIVE for any insurance company, as children are the least likely to have chronic illnesses of anyone in the population.

      I also don’t necessarily have a problem with the $80K across the board, anyhow. First, the odds that a family makes that salary wouldn’t have a health care option at their job (though with my point about BCBS, who knows?!) is minimal, so really what this provision would do is ensure that anyone who has children and doesn’t have health care options for them would be covered. How is this an irresponsible policy?!

      Ugh – rant, I apologize, especially since I’m preaching to the choir. :)

    95. October 24, 2007 at 4:39 pm

      thank you for posting this

    96. Pingback: Rox Populi
    97. Casey
      October 24, 2007 at 10:02 pm

      Thank you for posting this. I’m trying to make it on my own in Silicon Valley, CA as a 21-year-old student, and failing miserably. I live in the living room of a 1-bedroom apartment, pay $420 in rent, am trying to hold down a job (usually 2) and get my Associate’s Degree just so I have something. This quarter I couldn’t manage school and 2 jobs, so my parents’ health insurance won’t cover me. This was of course, the best time to get a UTI, a random cyst and still need to take birth control pills so I don’t add pregnancy to the list.

      This country is insane. I’d rather pay half my meager paychecks to taxes that supported children, schools and health care than live how I am now, in a country like this.

      I am so happy your daughter is well. I can’t imagine ever going through that, and I hope I never have to. You keep fighting your fights, I’ll fight mine, and maybe together, we’ll win. Oh, I hope so.

    98. October 24, 2007 at 11:34 pm

      Thank you–that was so powerful. It reminded me of the observation in “Sicko” that, by tying health care to employment, we have a system that leaves people scared shitless to roil the workplace pot in any way. Like, you know, being a pregnant electrician.

    99. Lola Raincoat
      October 25, 2007 at 1:10 am

      re comment #34: I call bullshit.

      I’m a US citizen who’s been a legal resident of Canada for seven years. I’ve been insured and uninsured in the US, in Los Angeles, NYC, Ohio, and rural Pennsylvania among other places. I’m covered here by OHIP, the Ontario health care system, alongside supplementary insurance from my employer that covers medications and such luxuries as massage and accupuncture. I’ve watched one friend here slowly die of ovarian cancer, and other friends have babies – two preemies – and generally the life course stuff has gone on as it does, and nobody has waited excessively for anything. One extremely overweight friend did have some trouble finding an MRI machine for a knee problem. That’s it, though. I know in some parts of Ontario they need more primary care physicians, but you know what? I didn’t have a doctor for years in the US because the small town I lived in didn’t have any doctors with openings in their practices. Market efficiencies, my Aunt Fanny.

      Some Canadians have this fantasy about how in the US everything is all up to date and modern, not like here. I don’t know where this fantasy comes from but nobody who has lived in both the US and Canada has it. YES the US needs what Canada has. I wish this system had existed for you when you needed it.

    100. Fraud Guy
      October 25, 2007 at 2:57 am

      My wife has worked in the medical field for years, performing insurance verification and collection for doctor’s offices and outpatient surgery centers. Her experience of insurance billing revolves around three principles: “deny”, “delay”, and “deceive”:
      Deny benefits; or when approved,
      Delay payment or approval; and
      Deceive about eligibility (the above pre-approval turning into denial).

      I laugh at those who state that insurance plans and government coverage will hide the true cost of medical treatment, and that without them people will have to decide whether it is more cost effective to treat problems or let them slide. Thus speaks someone who either can afford any treatment, or has excellent coverage. Conversely, they remind me of the person that said that only the rich should have dangerous habits, such as smoking, speeding, or premarital sex, as they can afford to get themselves out of the trouble they cause.

      I like insurance companies deciding that I am not covered for an ER visit, because the condition was later determined to not be an emergency; however, they could not explain how I, a medical layperson, could determine whether stabbing chest pains were or were not an emergency without medical assistance. Perhaps I was supposed to use my dial up connection to search their online database for symptoms matching my own while clutching my chest, or wait on their toll-free helpline to speak with a nurse at 3 a.m. while I tried to describe my symptoms while gasping for breath?

      Conversely, through my wife, I know that many doctors overtest to avoid being held liable for missing a diagnosis that causes later complications or death, but she went through 8 days of testing (one per day) to find the cause of her chest pains because separate approval was needed for each one after the previous test ruled out a possible cause (and during which time she became so dependent on pain killers that she almost coded), and how her trip to a different hospital for a specialist via ambulance was not covered because the ultimate cause was not-heart related, so the insurance company decided that the cardiac monitoring was not necessary in the ambulance ride (even though no-one could rule it out at the time).

      Then my father gets excellent care through his slowly farther away VA medical centers, who remind him constantly of when and where he has to be for his treatments (I can’t find the link to the story explaining how the VA became the most healthy medical group around the country).

      An aside: most insurance companies have contracts with providers that their payment, subject to copays and coverage limits, is to be accepted by the provider as full payment for the treatment. However, many providers (though not all and possibly not most) have patients sign agreements that any amounts not covered by the insurance are the responsibility of the patient. If they do try to collect on this (a practice known as “balance billing”) the best way to avoid collections for that amount is to send your insurance statement showing covered amounts and then verbally notify the provider that you will report their balance billing to the insurance company. That usually drops the issue quickly, but so long as everyone is chasing the much less mighty dollar (is socialized medicine why the Canadian dollar has finally surpassed the US dollar in value ;-) ?) health providers and insurance companies will try to fight you over coverage and payments, which is hard enough to do while you and yours are healthy.

      One further aside: HIPAA eliminated the ability for many HR specialists at companies to assist workers in untangling insurance nightmares, because they were no longer able to be party to private healthcare information. While streamlining the load of HR departments everywhere, it also deprived many of a non-attorney advocate to help them to deal with the tangle of insurance coverage/healthcare providing issues. Since the Department of Health and Human Services have prosecuted almost no HIPAA cases since it went into affect, despite their authority to do so and numerous cases that were covered, what was the real purpose of the regulations?

    101. October 25, 2007 at 11:41 am

      WOW. Just. Plain. WOW.

      It’s one thing to quote stats on how absolutely fucked up our “health care” system is; but to hear such a powerful story about how it affects REAL people’s lives???

      Wonderful post, La Lubu.

      And just one more reason why Nancy Pelosi and Harry Reid and the entire Dimocrat establishment should rot in fucking hell for being such enablers of the Ayn Rand Republican Right and defending the status quo.

      For me, it’s a simple formuila: Universal comprehensive single-payer health care funded by progressive taxation and livable wages. Merely defending S-CHIP (which, as valuable as it is, is still only a patch to cover up the fundamental issue of woefully deficient funding of health care and other social needs) simply doesn’t go far enough; it’s past time to torch the whole system and build a more humane, more egalitarian one.

      Oh, and as for RmBram and his cheap imitation of Limbaugh boilerplate: Make like Dick Cheney.


    102. October 25, 2007 at 12:59 pm

      I sit typing this comment around my 2-year-old with PDD-NOS, who has already benefited so much from Early Intervention, and who we could not possibly be providing enough services to without Early Intervention and MassHealth (Massachusetts state insurance program). I lost my job when four months pregnant with my second child, and my husband lost his job soon after and has only just found a new one; I have to keep applying for jobs in order to get unemplyment, but no-one will hire a visibly-pregnant woman, and even if they did, I wouldn’t be eligible for FMLA at this point with the baby due in December; nor is my husband.

      My son and I went to the demonstration in Boston to save S-CHIP last week; I wish it had helped.

    103. October 25, 2007 at 3:00 pm

      HIPAA takes a lot of blame for confusing privacy regulations, but it is also the law that establishes limits on the ability of insurers to deny coverage for pre-existing conditions if you have continuity of health insurance. It’s not perfect, but just imagine how much worse it would be without.


      Our current “system” is lunacy. But I’m not holding my breath for single payer universal coverage. There is too much profit in the status quo.

    104. Mary T
      October 25, 2007 at 3:29 pm

      Amazing, beautiful, moving, and persuasive post. Thank you. And bravo.

    105. October 25, 2007 at 3:30 pm

      I need a kidney transplant. I’m going to need one pretty soon, as my kidney disease has progressed far faster than anyone would have predicted. I was told initially that it would take me 3-4 years to get to this point, but here I am.

      The best thing for my health would be to get a living donor transplant before I have to go on dialysis at all, but a nephrologist just told me a couple of hours ago that he expects I may be on dialysis before the new year. If I can’t get a living donor transplant, I will go on dialysis and get added to the kidney transplant waiting list for cadaver kidneys. As I have blood type B, which can only receive from B or O blood types, I can expect to be on the list for 4 or 5 years, if not more.

      I have insurance through my husband’s employer. I have gone to the trouble of getting the transplant approved now, because all transplant-related care will be charged against the lifetime maximum benefit of $500,000. Thank goodness that they consider the transplant drugs, which run over $20,000 a year, to come from the prescription benefit and not from the transplant benefit, or I’d use up the transplant benefit pretty quickly. I may anyway, with transplants costing upwards of $200,000 now. The best thing for me to do financially is to go on dialysis ASAP, because after 2-3 months on dialysis (I forget which) you are eligible for Medicare, even if you’re not over 65. Then Medicare would pay for 80% of my transplant and the private insurance for the other 20%, assuming that they didn’t decide on a whim to deny it or that my husband’s employer didn’t ease him out of his job due to my medical expenses.

      He lost a job this summer that he wanted very much, but it was in a small company (less than 50 people). They said that his skill set wasn’t what they needed, but they knew what his skill set was when they made him the offer. Both of us think that the real reason his job evaporated so quickly is that my medical bills started rolling in and the insurance company threatened to raise their rates if they kept him on the payroll.

      We owe thousands in back medical bills. We cannot even afford our share of the bills most of the time. I don’t know how much of my medical bills have gone to collections, but there’s a lot there. I do not know how we will manage without losing the house, which is the only thing of real value that we have. It’s almost paid off.

      The prospect of him losing his current job scares me greatly, though he is working for a company which is larger by at least an order of magnitude and my medical bills are likely to be more of a blip than a shock to the system. Medicare doesn’t cover everything, and he earns too much for us to qualify for Medicaid. I put in for disability because of factors other than my kidney disease, though that certainly plays a part in why I am not working; I have no energy because of it I can do one errand or one thing around the house a day. That’s it. I’m done. What happens to our house if he loses his job?

      My mother wants to take me out of the country and get a transplant overseas rather than have me be on the list here. I am of two minds about this, despite her plan. I know that desperately poor people sell their organs for money to those overseas hospitals. She says we’d only do it if we could be guaranteed first that we could find the actual donor afterwards and give him or her $50,000 as a thank-you. (It would have to be the donor, and nobody else. We wouldn’t trust anyone else to deliver all of the money.) I think it helps to perpetuate an unjust system, because we would have gone with a purchased organ in the first place, but there is also the consideration that it would give me at least something like 15-20 years more life. It avoids the insurance issue because it wouldn’t be done under my insurance, therefore causing me to use far less of my lifetime transplant benefit. The lifespan stats of people on dialysis as long as I’d need to be to wait on the list aren’t great. 50% die within 5 years. 90% die within 10.

      No matter what the medical problem, the insurance/no insurance system causes us to have to game the numbers with our own lives. This is truly an unjust system.

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    107. Rosa
      October 25, 2007 at 11:02 pm

      Thank you for your story, La Lubu. We spent just a week in the NICU, but I remember the skinned looking infants, the fatigue, and the terrible worry.

      We spent some time when I was on bed rest going through the possibilities, and we decided if our son had any chronic health conditions, we would move to Canada (we even checked – as a family we have enough points, and my boyfriend’s job would transfer him if he made a case for it.) Because we pictured him as a young man, maybe wanting to travel for a few months or take an unpaid internship or an entry-level job with no benefits, and not being able to do it because it would bump him off health insurance for the rest of his life if he had a chronic health condition.

      At my company, insurance costs have gone up every year for the last three years, and this year a woman in our department had triplets. I’m guessing at least a 10% increase for next year. And yet my coworkers not only look down on local HMO options, they complain about “welfare” and people who have “kids they can’t afford.”

    108. Charlene Hamilton
      October 26, 2007 at 12:39 am

      Parachute? What parachute? I think we got shoved out of the plane without one.

      Get this: Out daughter has a rare genetic disorder. One that means she doesn’t sleep at night without sedation, and is hyperkinetic and often destructive all day (all day being4-5am to 9-10pm). We get no respite support, no family support, no therapies from Disability Services, because we’re not scraping the bottom of the welfare barrel.

      So we decide what is best for her, is a residential placement, and one with school attached, so she can actually continue to be educated while she gets many specialized therapies and medication management.

      First roadblock… there is no such beast withing 5 states of us. The closest is Kansas. The most apropriate for her needs? On the East Coast. 3000 miles away.

      So I fly over there to check it out, and discover the second roadblock. And not just a roadblock, a deal killer.

      Despite the fact that this facility is *perfect* for her… they can’t take her without the LOCAL SCHOOL DISTRICT’S OK.

      That’s right. Because of the way the federal laws are written, if she’s getting an education anywhere, it has to be in her Individual Education Plan. If it’s in her IEP…her home school district has to pay for it.

      Doesn’t matter if there’s more to her than her education. Doesn’t matter if this addresses the whole family’s needs, doesn’t matter if it will make her, in the long run, a healthier, happier child. Doesn’t matter that WE are her parents and should have final say about what happens to our child…

      Nope, all that matters is that the school district would be required to pay hundreds of thousands of dollars each year for one kid, so they won’t authorize it. And since they are only mandated by law to provide appropriate education…the people with the checkbooks don’t care about home and family.

      So, the people with the least interest in my child’s health and wellbeing, have the final say on what happens to her.

    109. October 26, 2007 at 12:47 am

      thanks for this post.

      not enough people know how twisted our system is. they just don’t seem to get it.

      i just wrote some lengthy posts about it so i’ll be brief here:
      i just got turned down for subsidized healthcare for my daughter because in order to qualify in NH, you have to be healthcare-less for SIX MONTHS prior to your application. i was paying hundreds out-of-pocket to keep her on COBRA, which counted against me. when i asked about the “buy in” program, which is still cheaper than what i pay now, they said i didn’t qualify because my income is TOO LOW, and besides which she’d still have to healthcare-less for at least THREE MONTHS prior to my application.

    110. calamity
      October 26, 2007 at 1:47 am

      I have never commented before, but this post compelled me to. Incredibly moving and very well written. I am forwarding it to all my friends.

    111. RnBram
      October 26, 2007 at 9:38 am

      Oink oink oink!! The Government!! It caused all this! oink, grunt grunt Be a better consumer for your emergencies; shop around! snuffle, snuffle, oink, grunt Privatization! Free market! Sink or swim! oinkety oink! Libruls! They wanna boil you like frogs! oinkoinkoinkoinkoink Don’t you see, countries with publically-funded medical care kill their babies!! gruntgruntgrunt For the love of God! All Heil Ayn Rand!! grunt grunt oink And stop being so emotional about it! What’s a (not so) few cold dead bodies for the sake of Mother Ayn? Sacrifices must be made!! snort! snort! oink oink oink

      RnBram, take a fucking hint already. I am not listening to this bullshit; not today. I’m home today as my daughter has a bad cold; she’s coughing up some pretty impressive mucus. I find that mucus more attractive than your argument. How private insurance works in the real world is that once you make a claim, your rates are raised. If your claim is large enough, those rates are raised to the point you can no longer afford insurance. If you claim is seriously large, your policy is terminated. Then try finding insurance. My mother has metastatic breast cancer. She is retired, but too young for Medicare. Luckily, she still has insurance benefits through her union’s plan, which offers retirees coverage (at their own expense). Over half her pension check goes towards that insurance. Yet, because of her previous status as a cancer survivor (this is Round Two) she would not have been able to purchase insurance at any price on the private market. Not any that would cover her in the event her cancer came back (which it did).

      My mother. My daughter. Real live, bona-fide, living, breathing, people. Not abstractions. Not statistics. And their lives are not up for debate. Not here.

      You don’t wanna know what I’ll do to any more of your nonsensical comments if you return.

    112. Brian76239
      October 26, 2007 at 11:05 am

      Once upon a time, a great greek philosopher noted that any
      society can be judged on how it treats children and the elderly.
      This story is a perfect indication of exactly what kind of society
      we live in.

    113. Alex
      October 26, 2007 at 11:59 am

      La Lubu: this was brilliant and horrific.

      As an aside – (mostly) Ontario ER wait times, on average in 2003-2004: about one hour (in the worst-ranked subset of cases; range from 5 minutes to 60) (here: http://www.cihi.ca/cihiweb/dispPage.jsp?cw_page=media_14sep2005_e ) (also has some BC, NS, and PEI stats factored in)

      US ER average wait times, according to an MSNBC report in 2006: 222 minutes, or 3:42 (here: http://www.msnbc.msn.com/id/15817906/ )

      Both are generally worse in urban centres and better in rural areas.

    114. October 26, 2007 at 8:51 pm

      Anyone who can read this post without aching for you and your daughter, and smiling at your hard-won triumph, obviously requires an empathy transplant.

    115. October 26, 2007 at 8:59 pm

      La Lubu, that was wonderfully written and really moving. My daughter was also a preemie, although only by 5-1/2 weeks. Your daughter is a real fighter. I’d love to hear what she is up to now.

    116. La Lubu
      October 27, 2007 at 11:04 am

      octogalore, thanks, and since you asked…

      She’s in the second grade. She likes reading (to the point where she still wants to sit on the carpet, pretending not to hear her teacher, when it is time to get up and do something else), but she still struggles somewhat—she’s made tremendous progress so far this year though, and will probably be on grade level by the time the school year ends (cross fingers). She wants me to read her chapter books several grades ahead of what she can handle now, so that’s how we spend bedtime—reading. We just finished “Stowaway,” a fictionalized account of the boy who sneaked onto a ship, only to have it be Captain Cook’s circumnavigation of the globe. She was fascinated. Maybe she’s ready for “Life of Pi”, no?

      She loves science, particularly when it involves animals. She wants to be a wildlife biologist when she grows up. Animal Planet is on constantly around here. She wanted Owl Puke for her birthday (yes. owl puke. comes in a kit, with a book and a bone sorting tray), so I got her Owl Puke. She is hoping to find an entire mouse skeleton in it. She even loves slugs. Petted a Madagascar Hissing Cockroach at the Illinois State Museum, and let a millipede crawl all over her too.

      She also loves art. I had a helluva time trying to teach her how to write, so I encouraged her drawing—figuring that if she could learn the necessary control for drawing, the skills would transfer to writing. She’s actually pretty damn good, and I plan to sign her up for an art class now that she’s doing so much better in school. There’s children’s art classes at the Harriet Tubman/Susan B. Anthony Women’s Self Help Center.

      We study kifaru jitsu twice a week. She loves blues, R & B, funk, and some rock. Not so much harder rock though; Mama gets yelled at for cranking up the volume on some songs. She’s picky about the hip-hop, too. We pretty much do everything together.

    117. Siobhan
      October 27, 2007 at 9:58 pm

      FWIW, I’m a Canadian living in Toronto who has had multiple minor-to-serious health care issues, including pregnancy, years of asthma treatment, endoscopy and a five-year course of treatment for adenomyosis that led to a hysterectomy.

      I can’t even remember if I was employed or not when I had my various medical issues All were dealt with efficiently, promptly and at zero cost to me.

      I can’t even imagine living the way you do in the US. It sounds barbaric and I really worry about the people who struggle to survive under those conditions.

    118. November 2, 2007 at 11:58 am

      am i happy not to be living in the states

    119. Shelley Barret
      November 4, 2007 at 8:23 am

      Hey Folks,

      I suspect I know this RnBram character.

      A old friend of mine, Barbara used to be married to a “Richard” whose surname begins with “Bram”. The fact that he was a foaming at the mouth Randroid made me make the connection. Before we lost contact she was the director of a big hospital in southern Ontario, and he was her “house husband”.

      And he talks about ‘bites the hand that fed you’ !! Wow. What a hypocrite!

      I find these Ayn Rand worshipers beyond belief. As the United States slips ever deeper into Fascism, (a fusion of interest between corporations, politicians and military), thy continue to laud Amerika as the bastion of the free world. Any fact that contradicts that viewpoint is ‘verisimilitude’. Scary!

      They also revile anything that is a “commons”. So what’s he doing posting in a site with a Creative Commons License. RnBram, stick to posting in your dissent-prohibited, for-pay, preaching-to-the-choir Objectivist forums hypocrite!


    120. A Canadian Reader
      November 6, 2007 at 10:19 pm

      Thank you La Lubu!

      I’m so thrilled to hear how well your girl is doing now and so down-hearted to hear yet another horror story about American (un)health care.

      I thank my lucky stars that I live in Canada. I have had a number of serious health issues. If I were living in the States, I don’t know what I would do since I am uninsurable by US standards. Here in Canada, I am self-employed and earning an excellent living.

      There may be a few stupid, Ayn Rand worshipping Canadians out there, but the vast majority of us would never trade our universal health care system for the Russian roulette system in the States.

    121. November 19, 2007 at 8:46 pm

      Bless you. And bless your little girl. I’m still wiping the tears from my eyes. (and considering moving to Canada)

    122. Allison
      November 22, 2007 at 10:57 pm

      It is terrible that so many people have to go through what you went through just so that your child can live.

      I would complain more about our country’s “health care system” and how it needs to be changed, but you already understand all that.

      I’m glad that something government-funded was beneficial to you. I hope one day stories like yours and millions of others will someday cause reform in this country.

      Best of wishes.

    123. June 15, 2008 at 7:33 pm

      Loved your article. My new book Navigating the Healthcare Maze will be released August 1st 2008. All my personal doctor and hospital experiences, all kinds of tips and easy to read.
      My blog and website will be up soon and would love to converse more with you.
      Take a look at my prerelease info on my book go to google, put in Navigating the healthcare maze jeff knott, go to the Midpoint site and click “more” under the book cover.
      Youw rite great articles and we both have a great passion for us to do better with ourselves and with the healthcare providers etc.

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