What do you do when you have a terminally ill child that is very much alive, and clearly deserves a chance to live? You do every thing in your power to find that help and you fight each day until there is no more hope.
Charlie Gard’s parents are doing just that. Unfortunately, not only do they have to fight Charlie’s rare disease, but they also have to fight the system which has set itself against them, and is determined to ensure that Charlie’s life support is turned off so that he can die in their words, “with dignity.”
Today, one of the UK newspapers that has been covering the story has raised the ugly question of (social) class in all of this. I wondered when this subject would be raised, and it is about time. I doubt very much that Charlie’s parents would have been fighting to keep his life support machine from being turned on if they were from the upper echelons of UK society, or if their parents were well connected.
They will go in front of a judge from a very privileged part of UK society tomorrow (Thursday), who will decide if their baby’s life is worth prolonging. He is from the upper echelons of society. He is well connected. His pronouncements to these two despairing parents have so far been patronizing, and poor reflection on the legal profession.
I can’t help but think about the Grenfell fire victims. There we had the tale of two housing systems. In the well-to-do housing system, tower blocks are pent houses. They have sprinklers, and everything needed to ensure that there is a low risk of fire. If a fire ever breaks out in the penthouse, the inhabitants are able to escape with their lives.
On the other hand, if one is poor and lives in a tower block, your housing block is likely to be decoratively refurbished with material banned by every civilized society, including the US and Germany, because it spreads fire. Sprinklers will have been omitted in the construction because of the expense. The clincher is that while the fire is raging you will be told to stay in your apartment The death toll is likely to be in the hundreds, but may never be known.
Why are Charlie Gard’s parents having to fight to keep him alive? Simply because they do not come from that well-heeled part of society that will ensure that the question of his life support being turned off is never even raised. This is a tale of two healthcare systems.
Putting Rare Diseases Patients First! 