Charlie Gard was born a healthy baby on August 4, 2016, but at eight months the child was diagnosed with mitochondrial DNA depletion syndrome, which causes progressive muscle weakness and brain damage. Charlie began to lose weight but in January 2017 his mother Connie Yates found an American doctor willing to offer Charlie a trial therapy called nucleoside.
Connie set up a website and succeeded in raising enough money to cover Charlie’s travel to America by air ambulance and the cost of the experimental treatment. But then the British legal system handed Charlie a setback.
On April 3, 2017, a High Court judge questioned whether Connie and Chris should be allowed to take Charlie to America for treatment, and whether doctors at the Great Ormond Street Hospital should turn off the baby’s life-support system. On April 11, the court ruled that the doctors were in fact permitted to do so.
The decision devastated parents Connie and Chris, from Bedfont in west London and both in their thirties. They vowed to appeal and in late April, more than 110,000 people signed a petition for Prime Minister Theresa May to release Charlie from hospital so he could travel to the United States for treatment. Charlie remained in hospital and on May 25, three Court of Appeal judges ruled that doctors should end Charlie’s life-support treatment.
Connie and Chris appealed but on June 8, three judges of the Supreme Court rejected their bid but told doctors to keep Charlie on life support for another day so the European Court of Human Rights in Strasbourg, France, could consider the child’s case. On June 13 the ECHR ruled that Charlie should be kept on life support until Monday June 19. On June 27, the European court rejected the parents’ plea to intervene in the case of Charlie Gard.
As the ECHR statement put it: “Today the European Court of Human Rights has by a majority endorsed in substance the approach by the domestic courts and thus declared the application inadmissible. The decision is final.”
According to a report by Sophie Jamieson in the Telegraph, “terminally ill baby Charlie Gard will be allowed to die after his parents lost their final legal bid to take him to the USA for specialist treatment.”
A spokesman for the Great Ormond Street Hospital acknowledged that the verdict was “very distressing for them” and promised “every possible support.” The hospital would be in “no rush” to change Charlie’s care and “any future treatment plans will involve careful planning and discussion.”
Young Charlie may not have long to live but his tragic case is a timely primer on “single payer,” health care, often mislabeled as “socialized medicine” but in reality government monopoly health care. This arrangement supposedly respects people’s “right” to health care but as it works out, government calls the shots and the people get only what the government wants to give them.
Despite pretensions to compassionate, universal coverage, the British government system did not cover mitochondrial DNA depletion syndrome. Likewise, health care bosses made no effort to facilitate the alternative treatment for Charlie Guard. Connie Yates and Chris Gard did that on their own, devoting themselves to the welfare of their son.
As they found, the system does not hold that the parents are the best judges of their own children’s interests. Government monopoly health care does not allow parents and patients to pursue independent alternatives, even if they are willing to pay for the treatments themselves. Witness the travel ban, the refusal to allow Connie and Chris to take Charlie to the USA for treatment.
Likewise, when Connie and Chris sought the nucleoside for Charlie, health care bosses said it was experimental and would not help. So the treatment was not tried and found wanting. It was found inconvenient and left untried. The victim was ten-month-old Charlie Gard.
As Ian Tuttle observed in National Review, High Court justice Nicholas Francis proclaimed there was no “scientific basis” for the prospect that the American treatment would help Charlie. Since he would not be any better off, the judged reasoned, death was “in Charlie’s best interests” and he should be permitted “to die with dignity.”
The case did not become a rallying cry for leftists warning that “someone will die,” if judges failed to allow the experimental treatment. After all, the left supports the kind of system in which the people get only what the government wants to give them, and independent alternatives are forbidden.
In the United States the case drew little attention and that should come as no surprise. During a furious health care debate, and the attempt to replace the disastrous Obamacare, the old-line establishment media shun any story that might cast doubt on the kind of health care Bernie Sanders and Hillary Clinton want.
On the other hand, legislators can learn a lot from ten-month-old Charlie Gard. They should reject any plan that forces the people to settle for what the government wants to give them. They should establish health care that respects human rights and enables the people to choose the care they need.