On December 20, 2007, in California, 17 year old Nataline Sarkisyan died of leukemia and liver failure. On January 6, in New Hampshire, Nataline’s parents spoke at a John Edwards rally.
Just before Thanksgiving, Nataline received a bone marrow transplant from her brother. Soon after, she went into liver failure. Her doctors at UCLA recommended a liver transplant, reporting their belief that she would have a 65% chance of living for six months. Natline’s insurer, Cigna, refused coverage, reporting that their own medical experts and an outside transplant surgeon concluded that the procedure was “experimental,” and therefore not covered.
Interestingly, in response to the public outcry, Cigna reversed itself on grounds of “empathy for the family.” But Nataline died before the procedure could be tried. It is reported that the local attorney general may press manslaughter charges against Cigna!
I have no expertise about liver transplantation for patients with leukemia who have had a bone marrow transplant. But neither does Senator Edwards. This looks like a situation in which the “left” is making politics out of a tragedy, just as the “right” did with Terri Schiavo.
Every health system has to set limits. This would be true even if Mother Theresa were the health czar. It is entirely reasonable to question the evidence basis for UCLA’s proposal or Cigna’s denial. Similarly, it is entirely reasonable to argue that the bar for evidence should be lower in last chance situations than in other domains of care. But Edwards, who I admire and largely agree with politically, does the public a disservice by presenting the denial as a moral crime.
Edwards favors extending Medicare to a wider range of citizens. If he ends up as president, it will be interesting to see how he addresses the issue of limits. As Oregon Governor John Kitzhaber recognized 20 years ago, universal coverage is impossible without limits. No limits, no universality. It is that simple.
True leaders must be educators. Understanding the ethical necessity for limits is counter-intuitive for those who are not familiar with the health sector. Edwards may have done an effective piece of campaigning yesterday, but he was not providing the kind of ethical leadership that improvement of our health system requires.
This is especially unfortunate. Edwards is a superb communicator -- just the kind of voice we need to help us come to grips with the sad fact that health care limits, well set, are an ethical necessity, not a moral abomination.