Everyone who has been touched by the case of Charlie Gard is in a terrible position. This 11-month-old British boy, born with an extremely rare mitochondrial DNA disorder that has damaged his brain and left him unable to move his limbs, has been in a hospital for months. Now it appears he will never go home again, not even to die. His parents lost their fight in the British courts to bring him to the U.S. for an experimental treatment, and now they have been denied their request to let his family have his last hours at home.
It is all too common, and sad, to see desperate patients submitted to agonizing and useless treatments just to grasp some tiny, unlikely hope at life. And yet for adult patients, that is their right — to choose the benefit of tiny hope, even knowing the high cost. For children, it is the right of parents to make that choice, not because the parents will always make the best decision, but because no one else cares so passionately for the welfare of a child. Even if you think that Charlie’s parents would be making a terrible mistake by taking him for experimental treatment, you should be troubled by the implications of government abrogating their right to make that mistake.
As I was pondering this case, another quite different piece of news came across my desk: The Journal of the American Medical Association published the results of two authors who modeled what would happen if measles vaccination rates dropped by even a small percentage. Their unhappy answer: “A 5% decline in MMR vaccine coverage in the United States would result in an estimated 3-fold increase in measles cases for children aged 2 to 11 years nationally every year, with an additional $2.1 million in public sector costs.”
This is worrying, because our target number of measles cases in the U.S. should be zero. Measles is a serious disease that can cause fatal complications like encephalitis. It is also preventable.
That’s why I support mandatory vaccination for any child who will go to public spaces like schools and airplanes and amusement parks, allowing exemptions only for medical reasons, or a sincere religious belief that can be demonstrated to extend beyond the desire to get your child out of being vaccinated. Otherwise, the temptation to free ride on the parents who do vaccinate their children will become too large, and we will end up with endemic pockets of illness that we should have stomped out.
But of course that seems to be at odds with my position on Charlie Gard. Why am I willing to let parents make one decision, however ill-advised, and not the other?