France may have the #1 rated health system in the world, but it’s highly doubtful my newborn daughter would have survived there. I rarely use this forum to weigh in on broader health policy and political issues.  This is a home for CHD – and our journey having a child with this birth defect.  But as someone schooled in economics, particularly health economics, it’s become increasingly difficult to brush off the over-simplification of our reforming healthcare system.  These random (and all too common) comparisons to damn near every other country on the planet are nonsense.  There are no other direct comparisons to the U.S. healthcare system, or the U.S. population, for that matter.  We’re talking 50 states here, with massive diversity, across a huge geography, each with its own cottage industry of healthcare.  It would be like comparing acquired heart disease among 12 different countries with no methodology in place for lifestyle, routine foods eaten, age, access to care, etc.  Frankly the healthcare system in France may be just perfect, for France.

So…to the commentators, if you are going to compare something like, say MRIs – which according to the International Federation of Health Plans costs on average $335 in Britain and $363 in France, and $1,121 in the U.S. – let’s also look at other key factors surrounding that cost.  Do the compensations for the technicians and the specialists involved in conducting and reading that MRI align in every country?  Should they?  Does it cost the same amount of time and money to education technicians and physicians in every country?  Is the equipment being used comparable? Who is making the decision to order that test?  Are the criteria the same…meaning, would the same patient be prescribed an MRI in say, France, as in the United States?  And what are the costs associated with the care of those diagnosed (or that go undiagnosed without the test)?

We’ve all heard the arguments of “over utilization” in the era of healthcare reform.  Many of those arguments are valid and deserve the scrutiny and quality improvement currently underway.  But the idea that a one-size-fits-all approach to medicine (or even population health) is what’s best for human beings…well, that’s just naive.  Notice I said “human beings”…not “patients”, not the “health system”.

I have no doubt that if my daughter Eve were born in nearly any other country on this planet, I would just be another grieving mother.  This is certainly true in the developing countries of the world, where surgery for newborns with critical congenital heart disease is simply not available.  But it is almost certainly also true in other developed nations too, including most of the ones ranked as having “better” healthcare than the United States.  It’s not just a matter of the caliber of physician or training, but a public health mentality embedded in the care system – one that without necessarily trying to – must simply allocate resources and care differently.

Our daughter’s heart defects were of the caliber that the vast majority of physicians would have thrown in the towel.  Ours didn’t.  It took a little bit of extra research, some feisty parents of other CHD babies, and a whole lot of serendipity to create the perfect storm that got our baby the care needed to repair her heart. But ultimately it was up to the doctors and institutions collaborating on her care to CHOOSE to save her life, with cost not being the criteria (note: for the record, I have long been an advocate for cost transparency in healthcare).  The tragic fact is, not just many, but MOST families from other parts of the world – even when their children have a CHD of lesser complexity – are simply given the devastating news: “there’s nothing we can do.”  That is that.  No more diagnostics, no supplemental interventions to extend life (time that might be used to try a different course of treatment, or get that child to a place that CAN change the outcome). The economics must also be factored in when this sort of pathway becomes the medical out-clause. With pediatric or adult patients – there are ramifications – job loss, divorce, costs of palliative or hospice care, or options being pursued in other places, on an emergent basis.

Yes, I do a great deal of work in health policy, and have had the great fortune to know hundreds of parents traveling the CHD road…along with the clinicians and public health professionals that serve these families. But I don’t write this with any authority other than that of a parent, whose child has endured months of hospitalization, dozens of chest x-rays and echocardiograms, 8 MRIs and 4 surgeries.  She has been under anesthesia 9 times in the past year alone.  I understand that having a child with CHD and a brain tumor makes us a double-fringe case.  We are healthcare super-users.  But I know with absolute certainty we would not want to be anywhere else on this planet.  We have our daughter – playing on the floor next to me now – to show for it.

I wish there were more stories about the bright spots in U.S. healthcare, for there are tens of thousands of those stories every single day. Lives saved. Families grateful to their core that they could get care they needed, when they needed it. But instead, we only hear about what’s broken.  And if I have had any sideline criticism of the reform process, it has been that one side could only focus on what was broken  - essentially throwing the baby out with the bathwater, while the other side couldn’t admit to the things that ARE broken. Whatever the many pitfalls of the U.S. healthcare system are, they can and will be overcome. Retain and embrace what’s good. Fix what isn’t. But above all, recognize that we need a better U.S. healthcare system, not to morph into that of another country.


Twitter Digg Delicious Stumbleupon Technorati Facebook

One Response to “Perspective”

  1. Thank you for your perspective on such a personal issue. Thank you for being open and honest and vulnerable about your situation. My 16 year old son, our only child was diagnosed with glioblastoma in 2010. He was given 2 months. By the grace of God and the care and concern of Baptist Hospital in Miami, Fl. Michael lived for 18 months. I am so grateful for the doctors, nurses, and all the other healthcare professionals. They were to put it mildly, amazing. While my son ultimately lost his battle with cancer, it was not for lack of fighting all the way. He was given the best care and the most current treatment known to man. I am convinced as you are in your current circumstances, Michael could not have received better care any where else in the world. Is America’s healthcare system perfect? Of course not. But to hijack the entire system for political purposes has been insane. I hope to God for your child’s sake, and all those who come after her, and my son, that we use reason and common sense, compassion and wisdom, to treat them all. May God bless you and watch over you and your daughter as you continue on this journey.