In the story of Charlie Gard — the seriously ill 11-month-old boy whom British health care is compelled to let die over his parent’s wishes — there is something important that is missing.
And the thing that is missing, whether it is missing by ignorance, fear or cold design, is sometimes the most important thing.
In the case of Charlie Gard, and the future of American health care, it is certainly the most important thing.
You’ve probably heard of Gard’s rare illness and the British health care bureaucrats who think it best that he die. And you also may have heard about his parents’ battle in the hopes of saving their son, and the latest court hearing where a last-ditch effort was scheduled in the hopes of bringing him to the U.S. for experimental treatment.
If you’re a parent, if you’ve ever spent time praying at a hospital with your child ill, you know about Charlie Gard.
But there is something about the story up to recent days that hasn’t been there. And what isn’t there also tells a story, one about what is being avoided.
Sometimes the reason for avoiding a thing involves ignorance, or fear; and sometimes it is about agendas that threaten political inertia.
But it is this avoidance, this not mentioning, that makes up the negative narrative space around Charlie Gard. And that’s where the story is, too.
Because what’s missing are American reporters, sent out by American editors and network news executives, demanding answers of American Democratic politicians who support single-payer government health care.
It may have been asked, but not nearly enough, or loudly enough. And the question is this: If America adopts such a government health care system, could what has happened to Charlie Gard and his parents happen here?
Yet I haven’t seen microphones in the faces of Democratic proponents of a single-payer health system, like the kind in the United Kingdom or Canada.
Because if national health bureaucrats can do this kind of thing in the United Kingdom, won’t American bureaucrats do the same thing here someday?
There is an answer. There’s always an answer, but this one has dropped into the negative space.
Those in favor of government health care might not want to answer it, and journalists in favor of such a system might not want to know. Or they might not want to appear rude.
But the answer is yes.
Conservatives have asked about it, but generally, what is considered to be the progressive “mainstream” or establishment media is focused elsewhere, on sexy stories about Russians and meetings and President Donald Trump and the legitimacy of the Trump administration.
All news competes for attention. But while the presidential soap opera of the Russians may reinforce our tribal political passions, the Charlie Gard story also reveals something about us.
Because this isn’t merely some story about science or a story about dreams of a miracle. There won’t likely be a miracle. Little Charlie suffers from a rare genetic illness. Blind and deaf, he endures painful epileptic seizures. His doctors in London insist that his illness can’t be treated, and that he will die when life support is withdrawn. And health care bureaucrats in London want it withdrawn.
But his parents, Chris Gard and Connie Yates, are fighting to bring him to the U.S. for a chance at experimental medicine. They’ve raised almost $2 million.
Yet British doctors say prolonging Charlie’s life will only cause him pain. They won’t even allow the parents to take their son home to die in their arms, at home.
Think of that. The bureaucrats won’t even let the child leave government care, where they’ve already decided, coldly, rationally, the way bureaucracies decide things, that they will end it.
So the Charlie Gard story is a political story, where a government and its bureaucrats, not the parents, decide whether a baby lives or dies.
Some governments might be seen as progressive, others as conservative, but to the people who pull the levers, one thing is understood.
Government is about force. It always has been about force.
They might be driven by what some call scientific reason, and by others as the end product of cost-benefit analytics. But with a bureaucracy, it always ends up being about the same thing.
And so what this story has been missing — putting political proponents of single-payer government health care on the spot — is perhaps even more important than ever.
Someday it might be your child whose fate is being decided by others. Someday it might be you.
This is an extremely difficult case. And, are there times when human beings should let go, or be allowed to let go, in the hopes of finding a final release from pain and suffering? Of course.
There are limits to medicine and to life span.
But who should make that decision? The government or the parents?
How far would you go to save your child’s life? Would you jump into a wild river in the hopes of grabbing her hand? Would you put your body between him and bullets if you could?
Or would you sit quietly, and allow bureaucrats to tell you what must be done?
So you might want to think of Charlie Gard, and what’s not being asked, what’s not being said, and why.
John Kass is a columnist for the Chicago Tribune. Readers may send him email at firstname.lastname@example.org