Friday, November 6, 2009

It Goes On and On and On and On

(with apologies to my father, who deplores politics on my blog, believing that it drives some people away...)

I spent about twenty minutes today on hold, trying to get through to UCLA's department of pediatric endocrinology. The Neurologist referred Sophie to the department last month, and I've tried to call them every day for a week. I put the phone on speaker and stood it up next to the pile of papers I was wading through. I listened to an interminable version of some Journey song which I found as agonizing as the politely worded letters from our insurance company stating that the tests ordered for The Husband (who might have suffered a stroke in early August, and we're still trying to figure out what exactly happened and what exactly might still happen) were not medically necessary and therefore not approved.

I'm really not making this up. These two things happened together and, sadly, are actually a regular occurrence in this home.

Don't stop be--leeeeeving, sang the phone and then it cut off and a human voice came on.

I was asked for all the relevant information, including why I wanted an appointment for my daughter.

We're trying to figure out whether hormones are playing a role in my daughter's seizures, I said.

The receptionist was very polite and told me that the first available appointment was:

APRIL 12th, 2010

and did I want it?

I declined and hung up.

Here's a quote from the estimable U.S. Senator, Republican Richard Selby of Alabama:

President Obama’s plans amount to “the first step in destroying the best health care system the world has ever known.”

After citing the well-known statistics of our country's rather abysmal ratings in infant mortality, healthcare costs, preventable deaths and maternal mortality, Op-Ed columnist Nicholas Kristoff of The New York Times stated: Moreover, there is one American health statistic that is strikingly above average: life expectancy for Americans who have already reached the age of 65. At that point, they can expect to live longer than the average in industrialized countries. That’s because Americans above age 65 actually have universal health care coverage: Medicare.
Click here for the whole piece.

And for anyone out there who just can't stand the idea of a faceless government bureaucrat telling you what to do with your healthcare, I ask you what the person looks like at your private insurance company or even at your big, fancy hospital. Hold on to those "pull yourself up by your bootstraps mentality" because you're going to need it when you get sick or your child does. At the rate this country is moving on real, meaningful, humanitarian reform, you might be waiting until you're 65.

And, yes, I'm perfectly aware of the luxury of this debate for someone like myself, for this country whose riches are vast. I'm cognizant of the relative ease with which I live compared to most of the world's population. But I was hoping for significant change because if it's difficult for someone like me, it's absolutely horrendous for a whole lot of other people.

Frankly, unlike that Journey song, I've stopped believing.


  1. To say I understand your frustration is an understatement. Just got a letter from our (national)health insurance today, requiring a re-application for somethining or other (for someone who has a genetic condition which is not going to change).

    Health care is a big issue world over, and although in the US you maybe in a relatively easier position compared to other countries, I don't see why you should not be expecting a significant change for the better!
    Wherever we are, we should be aiming for better health care.

    Hope you see some progress soon.

  2. After Izzy's two hospitalizations, our medical bills exceeded $1000 000. If we weren't blessed with the incredibly good health insurance that we have through my husband's company, we would be financially annihilated by now. Even if we had an average insurance plan, we would be drowning in debt, since even 10 percent of a million dollar is a substantial amount of money. I don't even want to think about the bill we will get after this last hospital stay. I also don't want to think about what will happen after Izzy reaches her lifetime cap. Or if we lose the coverage we have. What do people do who are in similar situation to us, but don't have insurance? Scary stuff.

    I come from a country where there is universal healthcare and it does have its problems and breakdowns. But at least people are not a sickness away from bankruptcy. The US has superb medical facilities that provide excellent medical care, but what is it good for, if people don't have access to them or can't afford them?

    I'm sorry you have to deal with this on top of the medical issues. It sucks.

  3. I have absolutely nothing to add to this. You said it all perfectly. Our health care system is so broken, so ineffectual, so frustrating, so unfair, so...fucked.
    Why are we so afraid of change? Why are we so afraid to take something and make it better? Why?

  4. It is your blog, so you write whatever you fancy!

  5. What tests, exactly, are "necessary" to ascertain what has happened when it is not clear??? I am sorry you have to deal with this.

  6. That's cute that your dad reads your blog. I agree, you should write about whatever you want...isn't that what blogging is about?

    I don't think I can add anything else to what you wrote either.

  7. I don't think Americans understand what universal health care entails. There is no government official telling us what we can and can't have. If the doctor orders the test, it's done, period. Some procedures have been delisted, which means the government won't pay for them, such as wart removal, there are others but I can't think of them right now, but delisted doesn't mean unavailable, just means you pay for it out of your own pocket.

    I find it amazing that an insurance company can decide whether or not a test is medically necessary, unless they see your husband themselves. But I'm preaching to the choir, I know.

    Good luck.

  8. No pun intended, but I feel your pain. When I see photos of anti-health reform rallies I often wonder "who are these people? What country do they live in? And most important- who is their insurer,who they love so much, cause it sure ain't mine!?" Health care, even for those of us who can (barely) afford it is a disaster- unaffordable, minimal and aggravating.
    The town we live in is full of doctors and hospital executives- most living in sprawling waterfront mansions with every visible accoutrement of wealth. Nice folks, all, but it really brings home the reality that health care is motivated by profit, not caring. Until we address that fundamental disconnect, we will never get meaningful reform. (Apologies to your dad for really bringing politics to your blog!)

  9. Boy oh boy. I can't even imagine.

    I can't imagine the wait for a little girl havig seizures.

    I can't imagine the no tests needed for a man who may have had a stroke and if not a stroke 'what'?

    Unlike your Dad I think this kind of post draws people and we all get to see your intelligence over and over and over.

    I think the healthcare system there is criminal. I really don't understand the delay.

    On to another topic I love what your father says, courage and strength.

    Love Renee xoxo

  10. I'm so sorry for you. It's incredible for us... and a little frightening. I don't know if the french system (almost free for people) is going to continue (not so sure with our stupid dwarf ) but i hope it's not going to be like in your... Courage.

  11. i just had the same experience last week too- I can't get Ab in for an appt for neuropsych eval until April 5th!! UUGHH!!

  12. thank goodness there are people like you talking about it. i live in a country with universal health care. people might not have a roof over their heads, but they have 24 hour access to health care... don´t really understand the hold up... i´m people will come around eventually.

  13. I'm sorry, that last line about Journey really cracked me up. April 1010. That's crazy. Insane. Stupid. Outrageous. Just almost funny, except that its not funny at all.

    "So now I come to you with open arms!" (of understanding and empathy)

  14. I hear ya. I guess so many people prefer the devil that they know. I'm not one of them.

    I hope you are eventually able to get the answers you seek on those seizures.

  15. You SAY it girl! (dont listen to your dad, with all due respect). I completely agree with you!

    While I have not had an personal experience with problems with health care, etc, i am acutely aware that most do -- i hear awful stories. I dont want to live in a country where I just care about myself and how good I have it while stepping over others who I have deemed "not pulling themselves up by their bootstraps" (oh, how I have such conflict and borderline contempt sometimes for that sentiment when used like a blanket statement).

    Walk a mile in someone elses shoes. Walk a mile.

    And, I love the point about turning 65. HA!

    im sorry you're having such trouble gettng your appointments... thats so frustrating...

  16. April 2010 -- ridiculous! This happens to us with endo all the time. And of course the only way to ever get an appt sooner is to have your other doc call up and make a stink. More time on the phone, more Journey songs.

    Even more ridiculous, the unapproved tests. I'm speechless on that one. I really hope The Husband is ok.



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