As Written By Joe Herring
Imagine the agony of learning your newborn child has an incurable disease. The overwhelming helplessness of watching your child decline as the disease advances cannot be overstated. Through eight long months of testing, procedures and treatments, the little, glorious blessing that you love so dearly slips further and further beyond your reach.
As a parent, I cannot imagine much worse.
But, thanks to the National Health Service (NHS) in Great Britain, I don’t need to imagine worse – they have provided a real-life example. In Great Britain, healthcare is entirely socialized – meaning provided by the government using tax revenues – and the forest of rules surrounding the administration of the system frequently obscures the path forward for patients and their families, making a hospital visit an often-treacherous journey indeed.
Little Charlie Gard, an eight-month old English boy, has a rare genetic malady that inhibits (and ultimately destroys) the ability of his cells to produce energy. Absent effective intervention, the disorder inevitably leads to death as the muscles used for breathing weaken to the point of collapse.
The NHS has given up on the child and has gone to court to strip his parents of their parental rights in order to legally withhold further treatments. Not direct euthanasia, but given that young Charlie will certainly suffer and die without treatment, this order would be the functional equivalent.
Charlie was lucky in one respect; he was born to parents who love him dearly and have fought with admirable ferocity to force the NHS to take their son seriously. Every failed treatment was followed by intense pressure from the NHS to abandon further efforts, forcing Charlie’s parents to fight the bureaucracy at every step.
Had Charlie’s parents taken the advice so forcefully given by the NHS when it was first given, Charlie would’ve been dead without any medical interventions at all.
An American specialist in these disorders has an experimental treatment that has shown promise in other patients. It isn’t a cure, but should it work for Charlie, it may offer him years of further life. The American doctor heard of Charlie’s plight and reached out to his parents, offering to take on his case.
Of course, the same NHS that stubbornly resisted spending a dime on Charlie’s care refused to consider the new treatment – a circumstance Charlie’s parents understood and accepted. But that didn’t mean they couldn’t try to find another way to pay the estimated $1.5 million dollar cost. Encouraged by the slim hope of saving their child, they embarked on a crowd-funding campaign.
Several celebrities caught wind of the effort and helped to promote it and a few days ago, the Gard family achieved their impossible goal. They raised $1.5 million-dollars to take their son to America for treatment.
Sadly, this story doesn’t yet have a happy ending. Citing their belief that the experimental treatment will not succeed, the NHS has refused to release Charlie to his parents, choosing instead to pursue their original decision to remove all life-support over the objections of both Mom and Dad.
This heart-wrenching drama has been playing out in British court, and the Judge is expected to make his ruling on Wednesday, the 5th of April. Whatever decision is rendered by the Judge, the enduring lesson of this shameful affair is the price paid by those citizens who are subject to the tick-box, formulaic medicine practiced by a healthcare system centered on the needs of bureaucrats rather than patients and their families.
When the government pays, the government decides – and in Great Britain, the life of an eight-month old child hangs in the balance.
The author writes from Omaha, Nebraska and welcomes visitors to his site at www.dailyherring.com