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Charlie Gard’s Parents Are Forced to Stop Fighting for Their Dying Baby – Article by Marianne March

Charlie Gard’s Parents Are Forced to Stop Fighting for Their Dying Baby – Article by Marianne March

The New Renaissance Hat
Marianne March
July 27, 2017
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I cannot imagine the pain Charlie Gard’s parents are feeling now, as they savor their last moments with their precious child. Charlie is 11 months old and he’s dying.

Chris and Connie have been fighting for months to get treatment for Charlie, ever since he was diagnosed with a rare genetic condition, mitochondrial DNA depletion syndrome. But they have been forced to give up that fight.

I can’t imagine their pain, but I can imagine their fury because I share it.

From the Hospital to the Courts

Charlie is not mine. I’ve never met him or anyone who knows him. Yet I am furious with the British government for refusing to allow his parents to take their dying son to the United States for treatment: a therapy trial, his last and only hope.

No further recourse was available in the UK, but an American doctor was ready to try to help him at Columbia University Medical Center. Charlie’s parents raised £1.4 million through crowdfunding; they had the money to take him to the US by air ambulance.

But doctors at Great Ormond Street Hospital in London didn’t like that idea. They said it wouldn’t help, that the American therapy was experimental. They said the baby’s life support should just stop.

On April 11th, a British High Court judge ruled with the doctors, empowering them to turn off Charlie’s life-support machines. His mother screamed “no” when she heard the verdict.

There was a petition with more than 110,000 names on it. People wrote letters to the Prime Minister, calling on her to release Charlie from Great Ormond Street’s care. The pope said he was praying for Charlie’s parents, “hoping that their desire to accompany and care for their own child to the end is not ignored.”

And now Charlie is out of time.

Even US President Trump tweeted that “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.”

Charlie’s parents challenged the decision in the Court of Appeals, the Supreme Court, and the European Court of Human Rights.

All to no avail. The Courts would not allow them to try to save their baby’s life.

Who Can Call This Justice?

And now Charlie is out of time. According to the BBC, “US neurologist Dr. Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.”

It’s possible that Charlie’s doctors were right, that experimental treatment wouldn’t have helped (although his parents don’t think so, nor do American and Italian doctors). But what harm could it have done when he’s dying anyway? And if his parents had the means to give him one last chance, why shouldn’t they exercise their right to do so? They belong to Charlie just as he belongs to them, and no one but Chris and Connie should get the final say on his medical care.

I never really knew what people meant by the phrase “death panels” before. It was just a term bandied about by talking heads and political personalities. It’s chilling how well it applies in this instance: a group of bureaucrats that sits around deciding who is worthy of medical care.

I don’t know how the power slipped away from the individual, whether taken by force or given away with applause, but this is outrageous. And it’s wrong.

Read with a Box of Tissues

I will leave you with the words of Connie Yates, Charlie’s mom:

Due to the deterioration in his muscles, there is now no way back for Charlie. Time that has been wasted. It is time that has sadly gone against him.

We want people to realise that we have been speaking to parents whose children were just like Charlie before starting treatment and now some of them are walking around like normal children. We wanted Charlie to have that chance too.

All we wanted to do was take Charlie from one world renowned hospital to another world renowned hospital in the attempt to save his life and to be treated by the world leader in mitochondrial disease. We feel that we should have been trusted as parents to do so but we will always know in our hearts that we did the very best for Charlie and I hope that he is proud of us for fighting his corner.

Charlie had a real chance of getting better. It’s now unfortunately too late for him but it’s not too late for others with this horrible disease and other diseases. We will continue to help and support families of ill children and try and make Charlie live on in the lives of others. We owe it to him to not let his life be in vain.

Despite the way that our beautiful son has been spoken about sometimes, as if he not worthy of a chance at life, our son is an absolute WARRIOR and we could not be prouder of him and we will miss him terribly. One little boy has brought the world together and whatever people’s opinions are, no one can deny the impact our beautiful son has had on the world and his legacy will never ever die.

We are now going to spend our last precious moments with our son Charlie, who unfortunately won’t make his 1st birthday in just under 2 weeks’ time, and we would ask that our privacy is respected at this very difficult time.

Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn’t save you.”

Marianne March is a recent graduate of Georgia State University, where she majored in Public Policy, with a minor in Economics. Follow her on twitter @mari_tweets.

This article was published by The Foundation for Economic Education and may be freely distributed, subject to a Creative Commons Attribution 4.0 International License, which requires that credit be given to the author. Read the original article.

Mr. Stolyarov Cited in The Heartland Institute’s Articles on E-Cigarettes, Medicaid Estate Recovery, and Doctors Withholding Treatment

Mr. Stolyarov Cited in The Heartland Institute’s Articles on E-Cigarettes, Medicaid Estate Recovery, and Doctors Withholding Treatment

The New Renaissance Hat
G. Stolyarov II
May 17, 2015
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My remarks have been cited in three new articles from The Heartland Institute regarding health policy issues.

* FDA Moves to Regulate E-Cigarettes – Article by Matthew Glans

As a nonsmoker, I do not have any attraction to e-cigarettes, but I am opposed, on both moral and practical grounds, to any attempts to restrict them. This article by Matthew Glans cites my remarks with regard to recent FDA attempts to limit the availability of e-cigarettes to young people.

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Excerpt:

FDA’s push to regulate e-cigarettes may invite unintended health consequences, says Gennady Stolyarov, editor-in-chief of The Rational Argumentator. Although many nonsmokers have absolutely no attraction to e-cigs or tobacco products of any sort, for some individuals, e-cigs may work as a substitute for traditional tobacco products or as a part of a transitional approach toward the cessation of smoking.

E-cigs lack the high levels of more than 40 carcinogenic byproducts found in traditional tobacco smoke, and they also minimize the harm caused by secondhand smoke, says Stolyarov. If somebody wishes to smoke, it is better for that person’s health and the health of others if the person smokes an e-cigarette.

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* California Seizes Estates of Deceased Medicaid Patients – Article by Kenneth Artz

This article by Kenneth Artz cites my remarks in opposition to the Medi-Cal “estate recovery” program, whereby California Medicaid recipients’ homes can be expropriated from them upon their deaths.

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Excerpt:

Stolyarov says the estate recovery program is an example of an extremely hardhearted government program that forces people to suffer because of family members’ prior debts or health care needs.

“A person should not lose the family home because one of his or her deceased parents had little or no income and took recourse to Medicaid to pay for treatments for terminal cancer or another terrible disease,” Stolyarov said. “This is especially true given the fact most Medicaid recipients have no easy way of knowing their estates are put in jeopardy when they sign up for the program.”

This situation also sends a cautionary message about socialized health care arrangements purporting to provide “free” medical care, Stolyarov says.

“There is always a cost, and there are always strings attached when any aspect of health care is centrally planned,” said Stolyarov.

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* Dutch Doctors Withholding and Withdrawing Treatment from the Elderly – Article by Kenneth Artz

It is essential to treat all medical patients as human beings with decision-making autonomy, whose lives are worth living. In particular, a decision to shorten life by forgoing medical treatment should never be made by anyone except the patient him/herself. This article by Kenneth Artz cites my remarks regarding a recent study in the Journal of Medical Ethics is that withholding treatment from certain patients (particularly the elderly) appears to be becoming a default decision by doctors in the Netherlands in many cases – rather than a decision deliberately opted into by patients.

While people ought to have a right to voluntarily refuse medical treatment, it is also the case that they should have the right to insist on any and every measure that could possibly prolong their lives, even if their chances are remote. If a patient wishes to try a treatment that has a remote chance of succeeding, but where the alternative is a certain death, that patient’s desires should not be overridden by a central authority or even a medical expert.

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Excerpt:

It is extremely important to respect the liberty of patients to make choices regarding their medical care and the aggressiveness with which they want to fight for their lives, says Gennady Stolyarov, editor-in-chief of The Rational Argumentator.

“What is disturbing about the findings of this study is that withholding treatment from certain patients—particularly the elderly—appears to be becoming a default decision by doctors in many cases, rather than a decision deliberately opted into by patients,” Stolyarov said. “The culture of medicine should always be guided by the premise that taking action to save life is the default, and only the patient should be able to make a different decision.”

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