Wednesday, October 7, 2009

To Have and Have Not, part 2

The other day I wrote about Fred Holliday. He had clearly troubling symptoms, was unable to get good care due to insurance issues, and is dead. I had the same disease, without symptoms, and it got caught during routine checks.

It hasn't stopped and it won't stop. A week ago I went to a dermatologist because of an itchy thing on my forehead that hadn't gone away for months. It was a pre-cancerous sun-related lesion, which would have become cancer. Caught early, it was frozen off in a one minute treatment that didn't even require Novocaine. I'm left with a spot on my forehead, which they say will be gone in a few weeks.

And every time I see it I think of Fred.

People argue about what reform is. To me there's nothing more fundamental than the simple question of whether people can or cannot get care, which among other things means taking care of little problems before they become big problems.

The simple question of "can or cannot get care" is such a fine line, like a razor's edge that makes all the difference in the world: if you can get care, your outcomes can be more or less like mine; if you can't, like Fred and his family, nature will take its course. You are on your own to battle it.

Fred was one of the tens of millions for whom the answer was "No." He's dead at 39, leaving a widow with a 3 year old and an 11 year old who's high-functioning autistic. And that sucks. It's a disgrace.

There are lives at stake in this issue, people. This stuff matters. We can do better.


  1. You're right. We can do better. This isn't (or shouldn't be the argument). What is arguable is how we can do 'it' better. I, like many around me, remain concerned that the general attitude is aimed merely at just doing something, regardless of whether or not it's actually better.

    Maybe a little less vitriol (not from you) and a little more actual professional debate is in order. This is what I and most other Americans would like to see from our leaders.

    Thanks Dave,


  2. Right on! Access to care is a fundamental step in this journey. How do we move this forward?

  3. Hey @Stales.... wussup with your TypePad user ID??

    Re how to move this forward, I think a first step is to have a clear vision of current reality. If we become aware of the human impact and suffering that comes from our situation, we'll be better empowered to use our creative energies.

    Right now the top-dog concerns in the conversation (as shown by the evidence) are the many "Oh no don't change anything!" voices.

  4. Yeah, Joe, once again you nailed the nuance: I chose my words carefully.

    As I said in the previous post, people argue about what should be reformed, and blah blah blah. While that goes on, I can't lose track of the fact that the system is just frickin' NOT GETTING THE JOB DONE.

    Really: all the technology exists (I'm talking about the treatments that exist, obviously); the overall sociological/economic system is just failing to get it to the people who need it. Yeah, we can do better.

    Thanks for good dialog.

  5. Only an OCD doc like me would miss your point and concentrate on the specifics of this case, but I am having trouble believing his insurance wouldn't pay for a CT scan or other imaging test to show an enlarged kidney? I am wondering if it was because he was abnormally young to contract kidney cancer and they wouldn't approve it based on some algorithm, or his doctor didn't order the test, thinking it was so unlikely at his age.
    This doesn't change your point of course, but it may support Dr. Sucher's comment that HOW we do something better may be important. It was my empirical observation over my pathology career that patients seem to be getting cancer at younger and younger ages.....perhaps the insurance co's and the profession need a heads up on this point.


  6. Amen! I also just went through a skin cancer ordeal.

    As someone who has worked in healthcare and personal finace along with being well-educated, internet-savvy and relatively well-off, I should have been perfectly equipped to deal with the ensuing insurance nonsenses. But the stack of bills for four stitches and two lab tests (all footnoted with cryptic pre-existing condition language) was overwhelming. A lot of stress and a few hundred dollars later, I've successfully managed to be cancer-free again. It just simply shouldn't be that hard.

  7. Well, Emily, it sounds like you should get involved in the Society for Participatory Medicine, in one way or another. We are a new and largely unfunded organization, in need of all kinds of assistance - including articulate speakers and writers. Write me if you want to do a guest post for the e-patients blog, or join the Society, or whatever.

    Thanks. Good to hear we're connecting with people's personal experiences.

  8. Lack of coverage is indeed an issue. Almost by a fluke of fate, my family was "fortunate" enough to experience life-threatening medical emergencies during a time when we all just happened to be covered adequately. And this at a time when none of us were really "supposed" to have the issues we did. Some of the issues were hidden -- and had been for years. Some of them were statistically unlikely. The unlikely conditions actually developed (at least in part) due to our reluctance to visit a doctor during the years when we did not have adequate coverage. It was almost an accident, that we were able to secure care. If we'd had the same lacking level of insurance coverage we'd had ten years ago, things might very likely have turned out quite differently -- and not for the better.

    The system is clearly broken, but one of my burning questions is -- there is clearly an opportunity for improvement here. Where are the entrepreneurs who can step in to fill the gaps between patients, insurance companies, and doctors?

    There's real potential there for a service-based business model which responds to an Actual Need (as opposed to the many businesses which launch without a viable market from the get-go). Is it an issue with profitability? Is it an issue with vision? Or is it that we've just given up on American healthcare and want to rip the whole system out by the roots?

    If folks perceived the opportunity in this and stepped up with valuable services in response to what is a pressing and very real need, we might be able to turn things in a different direction.

    But first we have to give up the bad habit of giving up.

    You did that, Dave. Perhaps others will, too.


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