What Charlie Gard Tells Us about Us

The fate of an 11 month old British baby is caught up in a battle between his parents and the government hospital and the courts. Charlie Gard suffers from  a rare genetic condition and can’t move his arms or legs or breathe unaided. “MDDS.” is an inherited mitochondrial disease. He is on life support and the condition is considered terminal. The parents want to take him to the United States where two hospitals have offered experimental treatment. Separately, even the Vatican has offered its hospital for treatment. The British hospital backed by the UK and EU courts has said no. Citing “Quality of Life” the hospital won’t even let the parents take Charlie Home. Who should decide? The state or the parents? The Wall Street Journal editorialized its position:

It may be that the experts the British and European courts invoke are right, that even with treatment Charlie won’t live much longer than he might with new interventions. But it’s not their decision to make. Or shouldn’t be.

Charlie’s mother says the hospital won’t allow her and her husband to bring their boy home, meaning that if he is to die, it will be with the hospital and not at home with those who love him. Which raises a question: Whose baby is Charlie, anyway—his parents’ or the state’s? In this delicate case, Britain’s national care system has elevated technical expertise over parental love.

Europe is much further along than America in its aggressive secularization and single-payer health-care control. Those values and priorities are on prominent display here, with an infant’s court-ordered guardian invoking “quality of life” as a reason for not allowing his parents to try experimental treatment.

Precedents matter when a society is confronted with these dilemmas. If the courts prevail in Charlie’s case, it isn’t so difficult to imagine another court ruling that a child with severe Down syndrome or some other genetic disease also doesn’t have the right quality of life. Who decides? Our vote remains with the parents.

In our opinion, favoring the parents over the State is proper. One could argue parents withholding treatment from a child should be overruled in the interest of the child. In this case the state is withholding treatment. This is where their argument breaks down and exposes the greater problem, the difference between state controlled health care (single payer) and real modern medicine. What is most important in this case is two US hospitals thought it was important enough to offer Charlie experimental treatment. If the British Hospital could offer no hope, what would possibly prompt them to deny another arguably better hospital a chance to try?  We believe the answer is in the trade-off one gets when you have single payer health care. When asked on “Meet the Press” about the Canadian single payer system, Malcolm Gladwell put it this way:

The reason Canada has single payer is that Canadians had a conversation amongst themselves many, many years ago. And they asked a very simple question, which is, “What do we want from our health care?”

And they came to the answer that what we want is a system that covers everyone. What that means is we’re willing to give up choice. We’re willing to give up the most high-tech solutions to various medical problems. We’re not going to have expensive, shiny hospitals.

This explains “single payer” mindset. “Coverage” takes precedence over medical solutions. Why try for costly medical advances in top-notch facilities? We can keep our costs down doing the old tried and true. When new solutions are proven and less costly maybe we’ll add them. As we have said, a witch doctor who treats everyone in the tribe gives universal coverage but it’s hardly modern medicine.

The judge in this case appears to have based his ruling on the therapy offered by the Americans lack of  tests on animals or humans with the same genetic disorder. The animals first, then humans and maybe then approval sequence brought to mind a medical conundrum from the 1980s. It’s hard to believe now, then 10% of the population was afflicted with ulcers. Stress of modern life was thought to cause this painful epidemic. A physician named Barry Marshall thought differently and laid the blame on the bacteria H. Pylori. He and his pathologist associate Robin Warren, were mercilessly ridiculed across the medical community.  Ulcers and its treatment  were “settled science”.  Everyone knew that. Unable to prove his case with animals studies as the bacteria only affects primates, he did the tests on the only human available, Barry Marshall. He made a H. Pylori soup and consumed it. His self tests proved unequivocally that bacteria was the underlying cause of ulcers. Further it also applied to stomach cancers. Simple treatment with antibiotics ended these horrors. Ultimately, in 2005 Marshall and Warren were awarded the Nobel Prize for Medicine. Let us never lose sight of what appears to be tried and true sound reasoning can be an excuse to hold back major progress.

The United States is responsible for more medical innovations than the next 5 countries combined. Even that doesn’t tell the whole story. Much of the innovative work done abroad is done in collaboration with and at the instigation of US entities. Great advances such as color TV or computers are always expensive to the first adopters but can lead to widespread affordable gains for humanity. The single payer countries seem to be content for us to do the heavy lifting and then maybe they get on board cheap. We finally caught on with the Europeans not paying for their own defense and we shouldn’t accept their excuses in medicine. If we join the single payer crowd, who then will continue the great medial advances?

This is why Charlie Gard is so important. Contrast the American Hospitals and medical personnel’s  willingness to push the envelope to  help a patient while advancing knowledge  with a single payer country concluding they don’t have the knowledge to help Charlie and aren’t interested in obtaining it. The difference really comes down to  managing life or saving it.

We’re sure foremost in Charlie’s parents minds is helping him. They are willing to pay so this isn’t a cost to the state problem. Beyond this they might feel even if Charlie still dies soon at least their son’s life may have contributed to better outcomes for children and others in the future. The first successful heart transplant patient, Louis Washkansky survived only 18 days, but where would we be if they didn’t even try? We’re organ donors to add positive meaning to otherwise sad occurrences. Can’t we at least give these loving parents that?

This is why, while we believe in universal health care, it should be applied in a free market that allows for and indeed encourages medical advances. After all, it just might be your child or grandchild that benefits. This is the principle behind Dave’s Plan we’ve espoused on this site.

(A late note. It appears the British Hospital has asked the courts to reconsider. Maybe they remembered what medicine is all about. If so we applaud this but it should never have come to this)

(Case now back in court. Waiting for a decision)

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