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July 14 2017

A U.N. Convention Is Hindering Charlie Gard's Parents' Efforts to Seek Experimental Treatment for their Sick Baby

by Charlotte Hays

As the terrible saga of little Charlie Gard unfolds in the U.K., with his parents desperately begging the court to allow them to use funds they have raised privately to bring their son to the U.S. for experimental medical treatment they hope could save his life, it is good to know that this could not happen in the United States--not yet at least.

The U.N. Convention on the Rights of Children--the name is especially Orwellian--is at the heart of why the courts have power to determine what Charlie's distraught parents, Connie Yates and Chris Gard, can and can't do on behalf of their very sick little boy. The U. K.'s socialized medicine system also plays into picture.

The U.S. wisely did not sign onto the U.N. Convention on the Rights of Children (to much gnashing of teeth from the enlightened among us). But here is how a U.K. professor of health law sums up the situation Charlie's parents are facing for the Associated Press (as quoted in The Blaze):

“Unlike the USA, English law is focused on the protection of children’s rights,” said Jonathan Montgomery, professor of health care law at University College London. “The USA is the only country in the world that is not party to the U.N. Convention on the Rights of the Child; it does not recognize that children have rights independent of their parents.”

Montgomery said that while it was right to consider the views of Charlie’s parents, the court will not make a determination on this basis.

“This case is about Charlie’s rights and what the evidence tells us that they require,” he said. “That will be the only consideration of the judge at the hearing.”

Savor the horrific irony: To protect small Charlie's rights, two European courts are stepping in to assert a particular right: little Charlie's right to die. Or, his right to die with dignity--babies care a lot about their dignity, right?

Charlie Gard is a very sick baby. He suffers from mitochondrial DNA depletion, which is said to affect only sixteen people in the world. Maybe a tabloid isn't the best place for medical information, but I am resorting to the Sun for a description of Charlie's condition:

Mitochondrial DNA depletion syndrome refers to a group of disorders that cause affected tissues to suffer from a significant drop in mitochondrial DNA.

The DNA is found in the mitochondria of cells – an organelle found in most cells in which respiration and energy production occur.

This means, as in Charlie’s case, that sufferers do not get energy to their muscles, kidneys and brain.

MDS is typically fatal in infancy and early childhood.

There is currently no cure but some treatments have shown a reduction in symptoms.

Charlie's parents have raised $1.3 million for treatments, if only Great Ormond Hospital, where doctors want to unplug life support and let Charlie die, will let them take him.

Commentator Charles Krauthammer has argued on TV that Charlie's situation is hopeless, but that the parents should have the final say. Krauthammer's position is that, if Charlie were his child, he would allow him to die. But Charlie is not his son, and Krauthammer argues for the rights of the parents.

On the other hand, a father whose son has a similar condition, and who is advising Charlie's parents,says that his son was given two months to live but now four years later shows improvement. This child was the first person to receive the therapy Charlie's parents would like to try. A U.K. doctor counters that Charlie's condition is "rarer" than that of the other boy.

In addition to the baby's medical prognosis, a frightening question is this: does the state or do the parents get to decide how Charlie Gard is treated? In effect, does this baby belong to the state and the courts or to his parents? Two courts already have decreed that Charlie should die. His parents want a chance.

The U.N. Convention is not the only factor that is taking the decision out of the hands of the parents. When a government controls the medical system, government inevitably ends up making decisions that formerly belonged to the family. ObamaCare, for example, set up a fifteen-member Independent Payment Advisory Board (IPAB)  that, if not repealed, eventually will make what were once deeply personal decisions on what kind of medical care individual Americans receive.

Government policy in the U.S. already prevents terminally sick patients from trying experimental medicine through stringent FDA policies. Carrie Lukas had an excellent article in the New Boston Post about the Right to Try movement that seeks to remedy this. The fact is that sometimes experimental procedures sometimes actually work and save lives. It may be rare, but don't people deserve the right to decide to try? The overwhelming point with regard to Charlie Gard is who decides: his parents or the government?

Meanwhile, Matt Walsh at the Blaze makes an impassioned plea for Charlie's parents to be allowed to seek treatment for their sick baby:

And even if I could overlook all of the factors I’ve just mentioned — which I most definitely cannot — it still would be a farce to pretend that Charlie Gard has so-called independent rights. “Independence” in a hospital bed he is not allowed to leave until they carry his dead body to the morgue? That’s what you call independence? Yes, he may be treated as independent from his parents, but that is so the government can step in and assume the authority that God has naturally bequeathed to the two people who conceived him and love him.  Children are “liberated” from the clutches of their parents in Europe only so that they can become vassals of the State. They are far less free as State property than they would be if their parents were in charge of them.

In seeking to repeal and replace ObamaCare, our legislators should remember Charlie Gard and have a special urgency to prevent the state from gaining control of our most intimate decisions. 

 

Independent Women’s Forum’s mission is to improve the lives of Americans by increasing the number of women who value free markets and personal liberty. Sister organization of Independent Women’s Voice.
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