Rare Disease Report

RDR Editorial: Deciding the Fate of Charlie Gard

JULY 22, 2017
James Radke
Charlie Gard is a 11-month boy on life support at Great Ormond Street Hosptial in London, England. His fate is scheduled to be decided on July 25th by Judge Nicholas Francis.

The judge will decide either in favor of the hospital, who want to remove the child from life support and relieve him of any more suffering, or in favor of the parents, who want to take him to the United States to undergo an experimental treatment that has not been approved, or really tested that much in humans.
I feel sorry for the Judge because I am not sure what the right decision is in this case.
Part of me wants to let the hospital ‘pull the plug’ and let Charlie rest in peace. The child has been through enough and any further intervention will only bring more discomfort with very limited benefit, if any. His disease, mitochondrial DNA depletion syndrome, has ravaged his mind and body, and the odds of any treatment at this stage being effective is extremely small.
On the other hand, the parents have raised the money necessary to send Charlie to America to undergo the experimental treatment, so why not let them do that — it’s their money.
Regarding the latter argument that favors the parents, there are 2 additional perspectives.

One is the notion to pursue this experimental procedure at this late stage in the child’s illness has more to do with easing the parents’ psyche than the child’s health. I bring up that controversial concept for the simple reason that the medical community frowns upon undergoing treatment that is unproven. Do you know of any doctor in the United States who would recommend sending a love one to a clinic on a Caribbean island to seek a miracle cure? I don't. The nucleoside therapy being discussed for Charlie is an experimental and unproven treatment. It has only been done in a few patients with similar but not identical conditions, and there are no published data to know if it works or not. So who is the treatment really helping – Charlie or the people who support Charlie and who are not ready to let go?
 On the other hand, at every rare disease meeting I attend, I embrace those parents who have not given up. They are the trailblazers, they are the ones changing the way rare disease patients get treated and managed. Without them, the rare disease community would not be what is it today – a powerful voice for the ones who often cannot speak. Charlie’s parents have been fighting the legal system for several months to give Charlie a chance. Whatever the outcome of this case is, odds are their actions will set a precedent for how similar cases are handled in the future. 
So, how will the Judge decide? A very good question that will likely come down to a simple premise that all doctors are trained to adhere to – first, do no harm. Is there more harm in letting Charlie die or in letting Charlie travel halfway around the world to undergoing experimental therapy that may help him or may prolong his suffering? I do not know what the right answer is to that question. I genuinely feel sorry for the judge involved in this case and am very curious to find out what he decides on the 25th.

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