The Update Desk: Charlie Gard

Yesterday, I wrote about the horrible situation faced by the parents of Charlie Gard, the 11-month old British boy suffering from a terminal illness and other medical complications, and their desire to bring their son to the US for experimental treatment.

The point of my post, which you can read here, was about our House of Representatives initiating efforts that would provide legal permanent resident status to Charlie during the middle of their efforts to repeal and replace the Affordable Care Act which, by all accounts, would take health insurance away from millions of Americans over some period of time. And, that this is just another in a long line of politicians getting in the middle of these situations, for better or worse.

We learned today that Charlie Gard will not be coming here after all; his parents announced they would no longer fight the courts but will instead allow him to slip away after life support is removed.

Even with that decision made, and taking out the meddling by our politicians, there's a lot to digest in this case.  This article in The Daily Mail touches on many of them.

In the end, there could really be no winner, as there never is in cases like this.  The justice in the case summed it up this way:

It is impossible for any of us to comprehend or even begin to imagine the agony to which Charlie's parents have been subjected in recent weeks and months as they have had to come to terms with the decision that they have now made. 

A lot of things have been said, particularly in recent days, by those who know almost nothing about this case but who feel entitled to express opinions. Many opinions have been expressed based on feelings rather than facts. My task today is to deal with the applications that are before me and to make the declarations which are now unopposed. 

Before I do so I must, again, pay tribute to Chris Gard and Connie Yates for the love and care which they have at all times given to their wonderful boy Charlie. 

I said in my judgment on 11 April that there are few, if any, stronger bonds known to humankind than the love that a parent has for his or her child; to lose a child, particularly at such a tender age, and in such tragic circumstances, is grief of a magnitude of immense proportions. 

These parents should know that no parent could have done more for their child. 

They have, however, now accepted that Charlie's life cannot be improved and that the only remaining course is for him to be given palliative care and to permit him to die with dignity.

The parents have announced that money raised through an online fundraiser will be used to start a charity to help children with the same disease.

Quick Takes (v19): Charlie Gard

Quick Takes

I'm not a huge fan of politicians interjecting themselves into healthcare decisions for individual patients or into particular kinds of healthcare decisions, such as contraception or end-of-life care. I've written about this stuff before (here, and here, for example).

Many times, the individual situations are dire, agonizing, and unimaginable for anyone who has not lived it themselves, and that's why (and when) politicians tend to get involved. Other times, it's because of a belief that we can legislate a preferred sense of values (chosen by the involved politicians) via giving or taking away payment for and access to healthcare services.

The cases are far more complicated when, for one reason or another, on behalf of one side or another, courts are involved.  This happens in America, and it happens in other countries - so that automatically qualifies our elected officials to meddle, right?

That's what's happening in the case of Charlie Gard, an 11-month-old British child with a terminal disease and other serious complications necessitating him being on life support. British courts have determined that further treatment for him would be futile but his parents are fighting. American and Italian doctors have gone to England to consult on the case, and the parents want to bring him here for an experimental treatment that will not cure him, but may prolong and possibly improve his life.

It's an ugly mess, as these cases typically are (remember Terri Schiavo?) but it's an ugly mess across the ocean and wildly outside the jurisdiction of the House of Representatives, one would think.

But one would be wrong.

It seems the House of Representatives has passed an amendment granting legal permanent resident status, which would allow them to come to the US for the experimental treatment (the House and Senate need to act before anything becomes official). In the middle of an intense national disagreement on what health care and health insurance will look like for Americans

• millions of whom stand to lose coverage quickly (under the most recent Senate plan) or more slowly (under the House plan), and
• millions of whom struggle to pay for insurance premiums, or face choices between paying for necessities like housing and food or paying for medical treatment, and
• millions of whom may end up in ridiculously high premium risk pools because of preexisting conditions, and
• millions of whom will go back to annual or lifetime limits on treatment of illnesses like Charlie Gard's, and
• millions of whom, even with insurance, have no reasonable access to experimental treatments themselves.

What are we doing? Why is our government meddling in a court case in another country? 

Why are we prioritizing one foreign child over millions of Americans?