Let us assume Charlie Gard had an eminently treatable disease that could be solved with a simple blood transfusion. With the transfusion, Charlie lives. Without it, he dies.
And what if Charlie's parents didn't want treatment? They were Jehovah's Witnesses who refuse blood transfusions because they think it is Biblical to do so. Should the parents have the right to "treat" their child with prayer instead of transfusions? Should the government step aside and let the child die because Charlie's parents are nuts?
What if Charlie's parents were medievalists who decided that their child should be treated by purging him - inducing vomiting, diarrhea, and leaching blood from his body - because the medieval ways were best. Are you up for defending that? Parents should have the final say, right? Government should propose, but never dispose?
Because if your argument is that parents should have the final say in the treatment of a child, then any parent who tries exorcism to treat epilepsy cannot be gainsaid. Any parent who tries to drive out the demon of diabetes with beatings is someone American Catholics must defend. Anyone who trepanned their child's skull in order to heal his schizophrenia is simply pursuing the treatment they think best, as is their right.
If you are not able to defend THOSE parents, if you think those treatments are indefensible, then you admit the government should sometimes take over because the parents - however well-intentioned they may be - are insane.
And, once you admit that parents can sometimes be crazy, you admit that what constitutes "a slim hope" or "a chance of a better life" is not necessarily as clear-cut as you would like.
Doctors had shared the parents’ hopes when Hirano said he had new evidence that Charlie might benefit from NBT, but had learned with “surprise and disappointment” last week that he had neither looked at the child’s brain scans nor read the medical notes, or even other expert opinions or the judgement of the court.
The hospital was also shocked to learn from Hirano that he “retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie,” something that in the U.S. would barely raise an eyebrow, but in the UK is seen as a serious conflict of interest.
Isn't this just a little off-putting? What kind of doctor issues a medical opinion before he has studied anything concerning the patient he claims he wants to treat? Everyone is always concerned about Big Pharma - what about Hirano's financial ties?
Keep in mind that this is an extremely rare condition. If the doctor had a possible treatment, he would have a hard time rustling up subjects. There isn't an animal equivalent, so he can't even run tests on mice, rabbits, apes. He needs human subjects with the condition, and there are hardly any at all.
So, along comes another instance of this very rare disease, you finally have someone you can test and write grant proposals over and... wouldn't you be awfully, awfully tempted to make claims about the efficacy of your treatment just so you can test it out? This disease is so rare it takes months just to find a single subject, and here is a subject, and... and... it sure would be convenient if we could just have him to test for six months.
No one seems to have entertained the possibility that the US doctor was a parasite looking for test subjects, and willing to exploit grieving parents facing a hopeless situation so that he could add a couple data points to his graphs. What if that's all this American doctor really ever was - just the front man for another medical exploitation, of the kind we are all too familiar with?
"The kid's going to die anyway... we might as well test the treatment out on him...." And when parents ask, "Will it hurt?", well, there's only one way the front man is going to answer that question, isn't there? "Will it help him?" Again, there's only one way to answer. He needs data points. He NEEDS data points. Every point helps, this disease is so rare. So...
But, once he has to physically stand in front of his medical colleagues, stand face-to-face with other professionals, how long can the charade continue? Once he gets a chance to physically examine the patient, go through the charts, go through the scans page by dreary page, and then he has to look the treating doctors in the eye... how long could your nerve hold through that?
"Oh, we .... we waited too long. Maybe, if I had gotten here sooner..." He gathers his Superman cape around him, along with the shreds of his dignity, and flies back to America. At least some good comes of it. His name is now well-known to the public. He'll get more cases, more data points. He may have lost the Charlie point, but... he got the publicity, and that's all that really matters.
Meanwhile, the parents have had hopes artificially raised and thoroughly crushed. Their pain is magnified, their anger stoked, and millions pile on, joining their pet causes to Charlie's corpse. Socialized Medicine, Big Government (tm), Medical Exploitation, Modern God Complex....
All the parents wanted was something that never existed. Charlie was born dying. The parents were sold a bill of goods, a pig in a poke, not just by that doctor, but by every person who threw a dollar into their kitty and told them "Charlie will certainly not die! If Charlie simply eats of that pill, his eyes will open, and he will have life."
Charlie Gard's situation is not about parental rights or big government or socialized medicine or anything else that has been hitched to his wagon. Charlie's situation is about Charlie. It was never anything else.