Extreme Makeover Home Edition: the deaths in America of two young fathers

My wife likes to watch Extreme Makeover, Home Edition. Tonight's episode tells of Pennsylvania resident Trisha Urban.

In February 2009 Trisha was pregnant and her water broke. Before they left for the hospital her husband went to do some last minute farm chores and never came back.

He had died, age 30. It seemed odd that the show didn't say how, so I googled. The Reading Eagle had the immediate story of the death and the birth. But then this, a year later in the Allentown Morning Call: For one Valley family, reform's 'too late for us'

Trisha and Andrew Urban once counted themselves among the ''lucky ones'' -- the people covered by health insurance. In 2008, Trisha was well into her first pregnancy and Andrew had developed a serious heart condition. Doctor visits became routine.

But their luck turned in September 2008. Their health insurance company sent them a letter saying Andrew's full-time internship, part of getting his doctorate in psychology, was only part time. The company dropped them from the health plan.

The Urbans and the university wrote letters and argued the internship was full time and the insurance should be valid, Trisha said. But to no avail. When they tried to get insurance elsewhere, they were denied because of their pre-existing conditions.

Five months after losing their insurance, Andrew Urban died. That same day, his daughter, Cora Urban was born.

About a month later, with mounting debt and mourning the loss of her husband, Trisha received another letter from her health insurance company: She and her late husband had been reinstated on the plan.

''Unfortunately, the health care reform is too late for us,'' said Urban, 33, of Tilden Township.

So what the show didn't say is that this young father had a serious heart condition, was cut off from care by the American healthcare system, and died from the condition on the day his daughter was born.

My mind shot back to late 2008, a year after my illness, when I had just begun my interest in healthcare. I'd been reading Tom Daschle's powerful, informative book Critical, and blogging about it. He relates how President after President since Roosevelt had tried to provide healthcare for all (which every developed nation has, except ours), and time after time, one interest or another had blocked the change. As I read and blogged, the Urbans had just been cut off.

And my mind shot next to another academic who had no health insurance, so his access too was denied until for him it was too late: Fred Holliday, husband of my friend Regina, the amazing mural painter, of ReginaHolliday.blogspot.com. He died a few months after Urban.
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I was raised being taught that America is the land of opportunity, but I mourn that these two young fathers' deaths involved something else distinctly American: denying healthcare to people who need it. It clashes loudly with "land of opportunity."

Today America's health reform bill (Patient Protection and Affordable Care Act) has not yet been fully executed - tens of millions still don't have coverage - but the law is passed and the wheels are turning. I'm so glad this administration got the job done: Thanks to the President, and thanks to every legislator, and hard-working aide and advocate, who took America where it has never been before: Extreme Makeover, Health Edition.
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I'm posting this on my old personal blog, where I wrote about health issues before I went into business. This topic isn't specific to patient engagement - except that it frustrates patients who do want to be responsible for themselves and access the care they need.

A thousand points of pain

E-patients, listen up. We have work to do, work we can do.

First, the challenge. Imagine you're trying to untangle a massive, knotted ball of strings, and every time you tug on one, you hear a scream of pain.

Now imagine that it's an economic knot, and every scream is a billion dollars of pain.

And now imagine there are a thousand strings in the knot ... a thousand points of pain.

That's the reality we face in American healthcare. It's a $2.4 trillion knot, severely dysfunctional in that it costs more and has poorer outcomes than any other developed country. Yet as Tom Daschle's book Critical details excruciatingly, every time we try to improve it by tugging on one part of the problem, powerful parties scream in pain, because they have a lot of money at stake.

(Strictly speaking, it's 2400 points of pain, each a billion dollars. I'll stick with the "thousand points of" meme.)

$2.4 trillion is 40 times bigger than Microsoft and Google put together. Imagine if you had to try to fix something that big. How long would it take?

Another view: it's been said for years that healthcare costs 50% more here per person than in most developed nations. If we could fix that with the wave of a hand, our total spending would drop by one third. And that means we'd instantly cut out $800 billion of business (1/3 of $2.4 trillion). Somebody would be spending $800B less, and somebody would be getting $800B less.

Citizens, that's going to hurt. And a lot of people are going to fight against it - not because they don't want better healthcare, but because they have a lot at stake, and it's tangled.

This is a big issue, but we do need to fix it: lives are at stake. Patients and their families are facing lethal diagnoses every day, and we/they need the system to work better than it does today. And that brings up another way to look at "a thousand points of pain": there are 1,000 cancer diagnoses in the US every six hours.* We need the system to serve us well. (And that's not to mention other life-changing diagnoses: Cushing's Syndrome, diabetes, and so many others. Did you know rare diseases are more common than the most common disease? Rare Disease Day is Feb. 28. Might be a thousand points of pain every hour – in the US alone.)

Personally, I'm starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.

The thousand points of pain will work on their aspect of it, and we need them to: I may be an e-patient, but I wouldn't have dreamed up the high dosage Interleukin-2 treatment that stopped my disease.

So let's get moving – let's show 'em how e-patients can git 'er done! Let's gather our facts, band together, create new tools, and spread the word to each other.

Shall we band together? I'd love to build a killer-fine list of noise-making, world-changing empowered patient blogs! As new Web tools come online, we can help each other build the new world of participatory medicine.

List yours here for the world to see, if you want. We'll keep in touch.

*1,444,920 new cases in 2007

Daschle 2: What about malpractice costs?

Preliminary note added 12/26/08: Please see the comments - Doc3osh found a mistake in my reading of the CBO report that I referenced. Will fix later.

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I want to get this one out of the way. This is my digging, not anything I've read (yet) in the book.

A common assertion from right-wing talk radio is that healthcare costs are high because of malpractice costs, which is because of tort lawyers. Let's explore.

This point was asserted in a negative review of Critical that I read on Amazon. In response, another person cited a Congressional Budget Office report saying that malpractice costs amounted to less than 2 percent of overall health care spending. Okay, let's dig and see what's real.

I traced the link and found that was in 2002. Details: $24 billion in malpractice costs; total healthcare spending $1.4 trillion, according to footnote 12 of the CBO report.

What's happened since then? Several times I've heard the figure $2 trillion as the current cost of US healthcare, but what year was that? I googled "total healthcare $2 trillion" and found that's for 2006.

That's up 43% in four years, consistent with the insane cost inflation in healthcare costs I've been hearing about. (Compare with the Consumer Price Index, up 13% in the same period. Healthcare inflation has been triple the CPI.) In gross numbers, that's up $600 billion in four years.

How about malpractice costs in 2006? $30.3 billion, up $6.3 billion in the same period. That's 1% of the $600B increase, not the lion's share.

So: I don't know who's responsible for asserting that malpractice is the cause of our healthcare inflation, but I conclude that it's either a manipulation or it's misinformed. It's certainly not from someone who looked at the numbers.

Tom Daschle's healthcare book "Critical"

I've started reading Tom Daschle's book Critical: What We Can Do About the Health-Care Crisis. This is an important book, because Daschle is the newly appointed secretary of Health and Human Services. It's his depiction of and prescription for healthcare in America. It's concise but detailed and easy to read. You should buy it; really.

I'll be summarizing it here using the approach I used in Best Care Anywhere: highlighting as I read, then posting the highlighted bits here.

So far, his reporting on our current reality matches what I've been able to learn from my reading this year of books and blogs.

As I've learned in studying data reported by PCPCC, the US is the only nation in the industrialized world that doesn't have universal healthcare. Not surprisingly, our overall level of health is also worse, which is bizarre because as I've reported, our per capita spending is also the highest, by far – more than twice the industrialized world's average.

And that's part of why 48 million of us have no health insurance at all, leading to people avoiding getting care. Which spirals into severe episodes, despite the vast evidence that regular care avoids the crises.

Did you know medical bills have been reported to be the leading cause of bankruptcy in the US? I checked Daschle's assertion (I'm spot-checking as I go), and here it is. Bonus tidbit from that report, not in Daschle's:

"Surprisingly, most of those bankrupted by illness had health insurance. ... 56% were home-owners. In many cases, illness forced breadwinners to take time off from work -- losing income and job-based health insurance precisely when families needed it most."

And that was back in 2001, people. Watch what happens now. 533,000 jobs lost in November. And realize that this problem does not exist anywhere else in the industrialized world.

And their costs are lower. Everywhere but in America.

In parting, a presidential statement to ponder:

"Millions of our citizens do not how have a full measure of opportunity to achieve and enjoy good health. Millions do not now have protectionof security against the economic effects of sickness. The time has arrive for action to help them attain that opportunity and that protection.

"People with low or moderate incomes do not get the same medical attention as those with high incomes. The poor have more sickenss, but they get less medical care. People who live in rural areas do not get the same amount or quality as those who live in our cities."

-- Harry Truman, 1945

A natural question is how things got this way, given that the situation is no better than after 63 years of action and the highest spending in the world. Comin' up.