Spoons and Swine

Spoon bouquet

This is something that gets passed around communities of folks with rare/chronic diseases. It’s well worth the read, since most of us will cross paths with someone with a chronic illness at some point. I can’t think of a better analogy. Click on the link that says “click here to read The Spoon Theory”. It’s a PDF, and… I’m not that tech savvy.

So it appears yours truly may have crossed paths with a certain infamous virus. I’m not sure if it’s the chronic pain/chronic illness or if it’s just the most hideous virus known to man, but wow, I’ve never met a level of pain that sent me running to the emergency room, but after 8 hours waiting for Killsya Permanently to call me back and prescribe tamiflu, and hopefully something, ANYTHING (that works) for the pain, since max doses of tylenol and motrin were lasting 30 minutes tops…. I had met my match, and spent enough hours sleeping (which is all I was capable of) in 30 minute stretches, moaning all the while.

It wasn’t just the pain, once I hit the threshold of every single “if you have this symptom, you might want to go to the ED” combined with pain that would make birthing quadruplets naturally, simultaneously (yes, REALLY) seem like a pleasant way to spend an afternoon….Thankfully 2 doses of Tamiflu on board, and a couple of doses of various pain meds, I got the pain back under control to the point where my usual self care is enough. Battling a migraine from being kept off my HCTZ, but that will resolve once the HCTZ is working again. Meanwhile dark rooms and Well-Patch are my best friends.

Now if anyone has a remedy other than antibiotics, salt water gargles, and citrus that can make tonsils like these look like these, I’d be grateful.



The Golden Rule

What worries me most about the article linked in that last post is the response of the AHIP.

A curt “no”?

Without some form of push back on private insurers, be it vigorous competition, regulation, or DEcreased tort reform (yes), and placing them back in the arena of antitrust regulation, they are going to continue to be the insurance version of soldier ants, eating anything that crosses it’s path, and endlessly hungry for more.

The great irony is, the public option isn’t going to be terribly cheap. What it will be is fair, and even-handed, and free of market corruptions. Most people don’t see the doctor very often, and don’t need that kind of access to specialists.

What a robust (but somewhat spendy) public option will do is likely SAVE insurers money. The very few really sick people would choose the public option. Some of them will work for employers who themselves like to have access to good care and have excellent private coverage. The rest will be folks who overall aren’t terribly expensive to insure. Given the rates they’ve been charging due to covering all these chronically ill folks, they could drop premiums AND see a vast increase in profits.

So why are they sulking?

They had visions of eating the whole pie (via mandated coverage) so now having to share isn’t such an appealing option.

That is something to think about further, isn’t it? Why would insurers want to insure sick people? Altruism?

More likely they had a game plan. They figured out a way to game the rules that they were hoping Congress would pass. In fact, given the millions they’ve spent lobbying Congress on this issue, they likely wrote much of what they were hoping Congress would pass.

So what if they had to cover everyone via mandated coverage? What if there were no threshold on how much they could charge, and no limit at which you could opt out?

That would mean some folks were paying 30, 40 or 50 thousand dollars a year. Or more.

By my estimation, we could charge every working human in this country an additional 10% in taxes, and provide Cadillac care to all of them. I don’t know about you, but the version the AHIP was dreaming of seems like a scam.

So what happens when people realize they’ve been roped in to mandatory insurance coverage, and they have no outside option, and the unexpected happens and they are roped into paying the vast majority of their income in insurance premiums?

Given the power the AHIP has been able to buy with their ill-gotten gains, what happens when they have that much more gold to rule with? If they have a guaranteed source of more income, how do we fend off their advances when we realize they are the corporate Medusa? What then?


That’s what I said

I should totally be wise old Grandma Czar.


Before I can begin to explain what I mean by the fable that is our excellence in research, I have to share an anecdote.

A family friend who happens to be fantastic at helping people see the bigger picture (literally, it turns out) once shared with me the following:

He used to have this big picture on his office wall. He would hand people a piece of paper with a pinhole in it, and ask them to look at the picture. He would ask them what they saw. Inevitably they would describe a shape, a color, a shading, some infinitesimal detail. He would then ask him what it was a picture of.

Talk about your “ah-ha” moments.

We humans often make the mistake of thinking that because we can see some tiny portion of the overall picture, that we actually have a freaking clue about what’s going on.

The interesting thing about medical research, is the vast majority is spent on the big diseases, cancer, heart disease, diabetes, AIDS, Alzheimers. Then there are the estimated 6,000 “orphan” diseases, which might get 1% spread among them. Then there are the thousands of diseases somewhere between major leagues and orphans that share another tiny portion of funding.

This means we do make some major discoveries in the big diseases. That said, how long have we been fighting cancer? The next big breakthrough has always been a decade away, but decades later, cancer still kills. Some forms can be managed, some are just as deadly as they were 40 years ago.


How about heart disease? Cholesterol from diet vs cholesterol from food, cholesterol as marker for heart disease, cholesterol as marker for inflammation, CRP as predictor of heart disease…. on and on it goes. We still don’t know very much. Often the latest “knowledge” is trumpeted from rooftops only to find 10 years down the road, the data didn’t mean what we thought it meant.

Unfortunately medical research in the US is looking at a huge picture through a tiny pinhole. Everything is sliced and diced into it’s smallest parts. This is useful for removing variables from data, but it is also useful for removing perspective. We can’t see the forest for the trees.

This is one area where the US fails miserably at medical research.

What if by researching the big disorders this way, we’re looking for the symptom, when we think we’re looking for the cause? What if there’s a greater cause, and because we look at each individual disease instead of disease processes as a whole, we’re missing the boat? What if we could have cured cancer, heart disease, diabetes AND Alzheimers 20 years ago?

Here’s the other issue: it’s not as simple as get a grant, do some research. That researcher has to work somewhere. The building ain’t free. Nor is the spendy equipment. Nor are the other experts the researcher must collaborate with in order to understand findings outside their area of expertise. Nor are the test tubes and bandages and vaccutainers and gowns and so on and so on.

This article is a great snapshot. Take the comparisons made, and look at the cost of things not specified. In the UK, the cost of caring for the patient while doing research is covered. All those supplies are already paid for. The researcher is paid for. Here, not so much. Insurance might cover it, except the vast majority of policies don’t cover research. The research might be funded (see above). You might be a millionaire and pay for your research experience yourself. So you really have to increase UK research expenditures to include the cost of merely caring for the patient who is being studied. I imagine that might well close the gap, or narrow it significantly.

However the most important thing to note is, by covering every patient, by each patient being forest, not just trees, you get a better overall clinical picture. You get to study more people, more diseases. As long as we are on a fee for service model, this is how research will work in the US, because we’ll never have enough money to adequately fund every disease. As long as we deem some diseases more important than others, we’ll only ever see the pinhole view of the human body.

When we see single diseases through that pinhole, we may be missing the element that connects each of those single diseases, and therefore the opportunity to cure many diseases, faster.

We Americans are obsessed with proving we are Superman. We don’t need food, we get our calories from coffee and cream. We don’t need sleep, we have LOTS of coffee. Shopping? That’s for people with no life. Lingering over a meal? Did you see the work waiting for me?

This interesting article, blog fodder in it’s own right, had me ranting. Americans are an unhealthy bunch. We don’t sleep, we don’t exercise, we don’t eat well, and we don’t have much down time. We drug ourselves to wake up, to go to sleep, to relax. No wonder we’re sicker than anyone else.

Whether it’s the addictions we have that get us through, the cortisol surging through our stressed-out veins, or the endless stream of processed crap we eat, we are a walking, talking bundle of inflammation.

I find it interesting that so many of these countries that beat us in health care outcomes also have a more sane approach to life and work and leisure.

I know, I know, here we go with the “why should I pay….”.

Save it for someone who gives a damn. If you want to be penny-wise and pound-dead, that’s you’re right. Me, I’m interested in finding out what works, because what we’re doing to ourselves? Ain’t it.

A Health Care Hero

It is all too easy to rant and rave about the wrongs, but I really believe the more we focus on what’s wrong, the more wrong there is, whether reality or mere perception.

I also believe that we Americans have become complacent. How many generations must die to protect our freedoms, before we remember to use the most basic forms? I am probably the worst offender on this count. Dealing with all I have on my plate may be an excuse, but it is a weak one. Democracy only works if we are all participating.

On that note, I’d like to tip my hat to someone I doubt knows the meaning of the word complacency. He’d probably blush at the description, but in my less than humble opinion, he’s the embodiment of what is best about the US. His story is one that has been told countless times before, the every man who stands up to the establishment. Unfortunately life rarely imitates fiction, and whistleblowers rarely get Hollywood endings. Yet this story is more engaging than any Hollywood could churn out, if for no other reason than the sheer brilliance of the central figure. That his brilliance is but a speck compared to his dedication and courage makes him all the more appealing. I wish there were more people like him.

My Grandfather was my father figure, and he had more integrity in his pinkie than most people I’ve known. Some might think him unyielding and set in his ways, but nothing could be further from the truth. He would give you the shirt of his back if you looked like you needed one. He would point out the cliff you were pelting towards, and then grab your hand to keep you falling over the edge. When he was in his 80s, a dear friend had gender reassignment surgery. Most of their friends abandoned her, either on moral or religious grounds, and likely some level of discomfort. My Grandfather remained close to her person until his death. That was a rare response 20+ years ago. He was kind, loving, compassionate, and just.

What little I know of Justen Deal reminds me of my Grandfather, the most honorable man I have ever known.

A Dog In The Hunt

I don’t understand the obstructionist tactics being used in this health care debate.

If there is no other fact that we can all agree on, this one must be understood: uninsured patients cost everyone else.

Only by insuring everyone, can we hope to stabilize our health care system, and avoid paying for someone else’s care. If they are insured, they will be paying, in some form or another, for their health care. If they are uninsured, sometimes they wind up paying not a dime.

I am tired beyond my ability to express of this game. If you don’t like current insurance reform proposals, fine, I empathize. I don’t like much of what’s been proposed either, but I’m continuing to be a thorn in the side of my elected representatives. However from my perspective, having actually studied our health care system as compared to others around the world, insurance reform is important. It’s important for our economy, national security, and from a human perspective. I can not understand what seems to me to be an “I’ve got mine, the hell with you” attitude. Maybe I’m soft, but my heart breaks every time I read yet another story of someone dying for lack of care, or for lack of adequate insurance coverage.

The fact that an effective health delivery system could deliver Cadillac care to every single American at a fraction of what we pay into the system now is horrifying.

Those of you with insurance, what is your dog in the hunt? Taxes? I understand. As I’ve mentioned before, we already pay for other people’s care, but we spend more, and get less. Why not take advantage of the opportunity to spend less, and get more? If you don’t like what’s being proposed, why not research health care systems, and make some proposals you can agree with? This likely is going to happen, how about being involved in creating legislation you can live with, rather than staying on the sinking ship of “no reform”?