Monday, July 03, 2017

Call next time you're in town!

I wasn't even aware of this story until TC brought it up.  It has echoes of two previous fights in American politics, and underlines how dangerously clueless Donald Trump is.

Charlie Gard  suffers from a rare condition, and the British courts have ruled that, since his chance of survival is zero, he should be removed from life support.  There's the first echo:  the Terri Schiavo case.*

The second is a plane crash during Reagan's administration, which occurred, if memory serves, in the Potomac.  A passing motorist jumped into the water and rescued a few people before rescue services could arrive to save the rest.  The motorist was rightly praised as a hero, but Reagan used him as an example of the volunteer nature of Americans, and how much better that was than relying on government.  Except, of course, it was government who saved the other passengers on the plane from the river, not a lone individual saving one or two people before other help could arrive.  Why the echo?

“This bill (to repeal the ACA) puts the protections and peace of mind that come with comprehensive health insurance out of reach for millions of people—including children, the elderly and those with disabilities,” said Dr. Richard Besser, CEO of the Robert Wood Johnson Foundation.

The Los Angeles Times noted that under a Trumpcare amendment, maternity benefits required by former President Barack Obama’s Affordable Care Act (ACA) will join mental health benefits, addiction and recovery treatment, pediatric dental benefits and more on the chopping block.

Massive cuts to Medicaid and Planned Parenthood will add to the burdens faced by women of childbearing age who need reproductive care and services.

Charlie Gard and his reality TV sweepstakes-style story of being rescued by a wealthy benefactor may tug at the heartstrings, but millions of vulnerable Americans with chronic or pre-existing conditions will probably never be lucky enough to find their own billionaire patron.

The Senate healthcare bill “rolls back expansion of coverage under the Affordable Care Act, which helped millions of people become insured,” said Besser. “It shifts responsibility to cash-strapped states for covering healthcare for the poor. It turns the financial support that made health insurance affordable for millions of people into tax cuts for the wealthiest among us.”
So we have to dump millions of Americans from health insurance, but we can get 8000 tweets about helping a child in Britain with almost no hope of recovery.  And now for the cruelty:  beyond a tweet, what is Trump going to do about this?  Authorize the money to fly the family to America, put them up and get a hospital room for the child, pay for the experimental treatment, and fly the family back for the almost inevitable funeral?  Will he pay for this himself?  Get the money from Congress?  Redirect public funds for this very private charitable service?

Do nothing at all?  Experienced observers can safely bet on the last answer as the most likely.  Does Trump care about this child?  No; Trump cares about Trump, and beyond the response he gets on Twitter, he won't give this matter a second thought.  Not soon enough to save the child from losing life support in Britain, anyway.

Last week, his parents lost their appeal to the European court of human rights (ECHR), the final stage in a long legal fight to take him to the US for trial therapy, meaning Great Ormond Street hospital (GOSH) could withdraw his life support and allow him to die.
Beyond a tweet, what is Trump doing about it?  Tweeting about job numbers and the DOW numbers, so far.

As I say, I know little about this case, but this is the summary of events per the Guardian:

His parents, from Bedfont in west London, want to take him to the US to undergo an experimental treatment but doctors at GOSH said that, given Charlie’s condition, the therapy was unlikely to have a beneficial outcome.

British courts ruled that it would be lawful for the hospital to withdraw life-sustaining treatment because it was highly probable Charlie would suffer significant harm if his life was prolonged without realistic prospect of an improvement. They cited established human rights law, which dictates that the rights of a child should take precedence over the rights of a parent.

In the final ruling on Tuesday, the ECHR said it had, by a majority of the seven judges who considered the written arguments, declared the application inadmissible. It “endorsed in substance the approach” taken by the British courts and declared “the decision is final”.

It added: “Consequently, the court also considered that it was appropriate to lift the interim measure.” That measure required doctors to continue providing life support treatment for Charlie.

Responding to the judgment, a spokesperson for Great Ormond Street hospital for children NHS foundation trust said: “Our thoughts are with Charlie’s parents on receipt of this news that we know will be very distressing for them.

“Today’s decision by the European court of human rights marks the end of what has been a very difficult process and our priority is to provide every possible support to Charlie’s parents as we prepare for the next steps.

“There will be no rush by Great Ormond Street hospital to change Charlie’s care and any future treatment plans will involve careful planning and discussion.”
Not dissimilar, then, in any significant regard, to the Schiavo case.  The hospital is acting with compassion and humanity, but as even the Pontifical Academy of Life says:

“We do, sometimes, however, have to recognise the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.” 
There is life support and there is life perpetuation.  Such is the state of our powers in this land of medical technology.  I've seen people undergo experimental treatment when all hope of recovery was lost.  I cannot recommend it.  It can have a cruelty all its own.

*More like the Schiavo case than I realized:

Numerous courts have ruled that any experimental therapy would not help Charlie get better and would only increase suffering of a baby who can’t see, move, hear, cry or swallow and has irreversible brain damage.

At some point you have to realize this case has been through several courts and numerous people are more familiar with the facts than any random group of American readers.

The president of a Vatican-owned hospital in Rome has said the doors of the facility are open to Gard’s parents if they want to transfer Charlie there. “We know that it is a desperate case and that there are no effective therapies,” Mariella Enoc, the head of the Bambino Gesù Hospital, said. “We are close to the parents in prayer and, if this is their desire, willing to take their child, for the time he has left to live.”

Which is not that different from what GOSH is offering the family.  I don't know the legal status of the case, or what authority the family would have to bring Charlie to America, where I'm quite sure the treatment would benefit the researchers far more than it would the child.  I am, as I said, quite sure Trump will do nothing about it beyond the tweet he wrote.


  1. Your point that the treatment would benefit the researchers far more than the child is a perfect summary of the issue. I've done a little reading about the range of mitochondrial disorders this includes and it doesn't look like they're near to finding a treatment that does benefit the patient. I wonder if the parents are being influenced by either researchers with a professional and monetary interest or people like Trump who want to turn their dying baby into a political tool.

    On the other hand, once Trump turned the baby into a political prop the "other side" did their part by turning him into one in opposition. I don't know why people who don't know anything about these extremely complex issues and who haven't had evidence about them presented would figure they have any important opinion about it. They also misrepresented what the Pope and Vatican have said about it, which is too nuanced and too complicated for it to register with them. It's like that Red Green game show where they investigate the three little words that men find so hard to say, "I don't know".

    1. Trump just wanted some of that sweet attention. It's what a 6 yr. old thinks is Presidential behavior.