Politicians Playing Doctor

Recently the British baby Charlie Gard has been in the news. Unfortunately he was born with a rare disorder called Infantile Onset Encephalomyopathic Mitochondrial DNA Depletion Syndrome. The parents of the 11-month-old boy have been in a court battle with the London Hospital caring for him since October. The hospital obtained a court order to remove the boy from life support as the doctors treating him said his condition was terminal and that treatment would just cause the boy additional distress.

The parents have held up hope for an experimental treatment with nucleosides a U.S. doctor has offered, even though he had not examined the patient. In fact no person or animal with Charlie’s condition had ever received the treatment. Reportedly 9 patients with a related disease had some improvement with the treatment.

President Trump weighed in:

If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.

— Donald J. Trump (@realDonaldTrump) July 3, 2017

Recently Republican House Congressmen Brad Wenstrup (Ohio) and Trent Franks (Arizona) said they would introduce a bill to give Charlie permanent residency in the United States so he can travel for the experimental therapy.

I sympathize with the parents. It’s awful to see your children with serious illness. However sometimes stopping care really is the best thing to do. The US doctor reportedly said a 10% improvement in strength was possible. But that’s the same as saying you can go from lifting 10 lbs to being able to lift 11 lbs. It’s just not going to make a significant difference.

I also believe in research studies. In fact close to 20 years ago I had a patient with a different neurological disorder who could not be removed from a ventilator. I received FDA approval to administer an experimental treatment. It may have helped – they did get off the ventilator, but they died not that much later. That drug had preliminary treatments in animals, then in humans.

If our politicians were really that concerned about the health of an infant in another country, maybe they would accept refugees from countries such as Syria, where innocent people have been in terrible conditions. Their chances of improvement would practically be guaranteed. Unfortunately for Charlie, that’s just not realistic.