Sunday, August 28, 2011

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 He died a few months after Urban.

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.

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.


  1. Dave- I think you've jumped the gun implying that health reform is "done" -- coverage is less than complete, the Supreme Court has yet to weigh in, and we have done nothing to address medical inflation which will bankrupt the US and is also a threat to most nations that already have universal coverage. When we really get health reform, I can't tell you what it looks like but I can tell you that it will change they way everyone provides and accesses healthcare. Anything less will be unsustainable.

  2. You're sharp, Peter - I chewed on what wording to use for that, precisely because I didn't want to say that the future is rosy. That would be naive, for the reasons you cite, if not more.

    My key point in any case is that whatever their medical destinies, those two fathers could not get care due to this distinctive aspect of the American health system.

    As I finished the post I realized my own case was this close to having a similar outcome: When I moved back to New England five years ago (July 2006), I unexpectedly found myself unemployed and thus unable to afford the check-up I wanted to get with Danny Sands. My new job started 9/18, and I promptly made a (non-urgent) appointment, which was 3 months out.

    I had COBRA from my previous job, but that policy was in Minnesota, so a physical in New England would have been out of network, unaffordable.

    That physical led to the discovery of my cancer. Had I remained unable to pay for the physical much longer, it would have been too late.

    I'm not asserting there are easy answers. I guess I am, though, asserting that without access to care, nothing else matters.

  3. Being a patient advocate / empowered patient is difficult when you're this close to it, because we imagine and are so close to actually feeling what would have happened if each story we hear and see were us. I don't know how you guys/gals have managed -- but certainly the engagement is necessary. Thanks for posting this up, Dave!

  4. Ah, Dave it is such quandary. In the poem "Wheals on the Bus" I ask the same question.

    "I go to sleep at night and think of coding.
    Is our savior high within the data cloud?
    Is access to our care, as great as knowledge?
    Where shall peacefulness be found?"

    Indeed, is access to our care, as great as knowledge?

    It seems we must have both to change medicine for the better. I am so very glad you got insurance when it was needed in addition to the participatory care that saved your life.

    I am so glad you have dedicated that new life to helping others who have neither insurance or knowledge.

  5. But don't you know in Canada you have to wait 10 months for your firs pre-natal appointment and in the UK everyone dies of cancer and there are no oncologists? It's true--I heard it on the Internet.

    Which is why we need to KEEP telling these terrible stories....(thanks Dave)

  6. I do worry, as Peter does, that without significant reform, however, that even that option won't be affordable for long. Health insurance, even when available, now costs the average employer $4,500 per employee and $13,000 per family plan. While individual policies cost less per month, they cost significantly more from an out-of-pocket perspective with ever increasing deductibles and co-pays being leveraged to keep monthly payments within reason. According to eHealth, the average policy for a family of four in WA state, can be obtained for $439 per month, but it has a deductible of $3500 per person ($14000 per family) and a $8500 out of pocket maximum or $34000 per family. The ACA will limit the utilization of these types of plans, which will drive monthly premiums up.

    I worked for an health insurance company for one year (the year that the ACA was passed). I learned a lot about the industry structure that year and know that it is not going to be an easy problem to solve ... but I also had an "Imagine this" moment.

    ... Imagine a world in which the annual incentives for all executives associated with healthcare delivery were tied 100% to making meaningful and measurable impacts on the healthcare cost trends ... no one would make any money in year one but by year 2, we would probably be focused in many of the right areas ...

    Thanks for keeping us focused on the whole picture Dave.

  7. Lisa,

    Indeed, the cost of care is an additional issue that applies to everyone, with or without insurance.

    Here's an even better imagine": "...the annual incentives for HC executives are tied to impact on HEALTH trends."

    Perhaps Fred Holliday's case, Andrew Urban's case, and my case indicate the future faced by anyone who can't afford what we were taught as kids was good practice: prevention, early detection, and dealing with things before they become a crisis. It seems whoever is driving our costs in the current direction, they're also driving us away from avoiding expense.

  8. From Twitter reader @CyndyNayer:

    Great post, Dave. It highlights the tragedies of incomplete or erroneous information. Let's also highlight the opportunities that could minimize these tragedies, if we REALLY put the patient first. With a real Personal Health Record, or, a Personal Health Mgt System, all of the documents that are relevant for MY health would automatically download into my system, such as my medical, dental, behavioral health, Rx records, all of my claims records, my explanation of benefits, and any warnings that I could be losing my health benefits or taking drugs that could have dangerous interaction.

    Why is it that we don't trust this system, yet the VA uses it, we all use it for our banking records, and there are many apps now that organize multiple financial-investing accounts into one portal? This is shortsightedness that leads to avoidable errors and deaths. A colleague of mine at Dossia, which has grown into much more than a PHR but a family-leader health mgt system (think: women make most of the decisions for the family, why not make accumulation of health data easy for her?), taught me a very wise motto: Nothing about me without me. I'm growing quite tired of patient-centered anything that doesn't include the patient.

    Cyndy Nayer
    CEO Center for Health Value Innovation

  9. Implanted medical devices are too easily cleared for the US market according to the Institute for Medicine 7/29/11 report.

    Please sign my petition to Congress and President Obama asking that the patient-as-stakeholder is instituted in the Charter of the FDA for implanted medical devices.

  10. Joleen, how is this relevant to this post? I don't think there was anything about implantable devices here, was there?


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