Health & Science
Breaking Down the Charlie Gard Treatment Controversy
Last week, Judge Nicholas Francis of the Family Division in the U.K.’s High Court of Justice ruled that Charlie Gard’s parents had 48 hours to present evidence that experimental treatment will improve their son’s condition. At a subsequent hearing on Thursday, the judge decided that Gard should be evaluated by an American doctor who claims that an experimental treatment may improve his condition.
“I have to decide this case not on the basis of tweets, not on the basis of what might be said in the press, or to the press,” Judge Francis said last week as he gave his initial ruling, alluding to the global interest in the case.
But how has this case garnered so much attention from people in the U.K., people across the world, and even world leaders? Read on to learn more about the Charlie Gard case and the controversy surrounding it.
Who is Charlie Gard?
Charlie Gard, born August 4, 2016, suffers from a rare genetic condition known as mitochondrial DNA depletion syndrome (MDDS). It is caused by a mutation in which the cells’ mitochondria stop functioning. More specifically, Charlie has RRM2B encephalomyopathic MDDS, which progresses rapidly and can lead to death within a few months. There is currently no known cure.
Gard developed normally for the first two months of his life, but by mid-October, he was on life support at the Great Ormond Street Hospital (GOSH) in London. Today, at eleven months old, Charlie is unable to breathe without a ventilator, open his eyes, hear, eat unassisted, or move his limbs. His heart and kidneys are failing, and he suffers from persistent severe seizures.
What Can Be Done?
His parents, Chris Gard and Connie Yates, want him to undergo an experimental treatment called nucleoside therapy, which has shown some success in treating mitochondrial disease in laboratory mice.
The therapy was used in Baltimore on Arturito Estopinan, a boy suffering from TK2-related mitochondrial depletion system. His father, Art Estopinan, met with Gard and Yates and discussed the treatment. According to him, while the treatment is by no means a cure, Arturito is “getting stronger every day.”
The video below goes into more detail about Estopinan’s treatment.
The treatment has never been used on mice or humans suffering from RRM2B MDDS and it is currently unavailable in the U.K.
According to the family’s GoFundMe page, a doctor in the U.S. accepted Charlie into the treatment program of their own hospital. So far, the family has received over 1.3 million euros in donations to get Charlie to the U.S. and pay for the treatment.
The Court Battle
The doctors at GOSH, however, are opposed to the idea. Although they applied for and received ethical permission to treat Charlie with nucleoside therapy, the baby’s condition had worsened so drastically by that time that they decided against moving forward with the treatment. The view is that his brain damage is too severe for treatment to be of any help, and that it would be kinder to let Charlie die with dignity. Against the parents’ wishes, they planned to take Charlie off life support, court documents show.
In the U.K., when parents and doctors disagree over the treatment of a sick child, the courts step in. Gard’s case went to the High Court, with Justice Francis presiding. On April 11, he ruled, “with the heaviest of hearts” that the hospital “may lawfully withdraw all treatment, save for palliative care,” and that it was in Charlie’s best interest not to undergo the experimental therapy. The Court of Appeals upheld the decision on May 25. The Supreme Court reviewed the case on June 8 but ultimately agreed with the lower court’s ruling. The family’s lawyers then petitioned the European Court of Human Rights, but on June 27, the court rejected the plea and ruled that Charlie’s life support would be turned off on June 30. GOSH later extended the deadline after Gard and Yates posted a video message blasting the hospital for not allowing them to take their son home to die.
The World Weighs In
Before the extension was announced, Pope Francis tweeted a message of support to the Gard family:
To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.
— Pope Francis (@Pontifex) June 30, 2017
There may not have been any names, but papal spokesperson Greg Burke clarified the pope’s meaning the next day by retweeting the message and adding #CharlieGard.
“The Holy Father follows with affection and commotion the situation of Charlie Gard, and expresses his own closeness to his parents,” Burke said in a statement. “He prays for them, wishing that their desire to accompany and care for their own child to the end will be respected.”
In addition, the Vatican-owned Bambino Gesu Hospital in Rome asked to have Charlie Gard transferred there, but representatives from GOSH refused due to legal reasons.
The pope’s tweet may have come as a response to the Pontifical Academy for Life, which put out its own statement three days prior. While supportive of Gard and Yates, the statement, signed by Archbishop Vincenzo Paglia, vacillates between middle-of-the-road and sympathetic to the decision of the European Court of Human Rights. “The proper question to be raised […] is this: what are the best interests of the patient? We must do what advances the health of the patient, but we must also…avoid aggressive medical procedures that are disproportionate to any expected results,” the statement reads. The Academy’s words raised eyebrows and ire across the board.
Whether rebuking his fellows or not, the pope is not alone in his support for the family’s efforts. Three days later, on July 3, President Donald Trump weighed in on the case:
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
The tweet brought Gard’s case to America’s attention and raised support among the president’s fellow pro-life conservatives. An unnamed U.S. hospital offered Gard free treatment. Congressmen Brad Wenstrup (R-Ohio) and Trent Franks (R-Arizona) have promised to introduce a bill to give Charlie Gard lawful permanent resident status in the United States when Congress returns from recess. Rev. Patrick Mahoney–a pro-life evangelical preacher and president of the Christian Defense Coalition–flew to the U.K. last week as a self-appointed spokesperson for the Gard family. He claims to have met with a senior White House official beforehand and says he is currently keeping President Trump updated on the case.
Meanwhile, Prime Minister Theresa May voiced support for the hospital, saying, “I am confident that GOSH have and always will consider any offers of new information that has come forward for the well-being of a desperately ill child.” Foreign Secretary Boris Johnson agrees. In a conversation with his Italian counterpart, Johnson said it is “right that decisions continued to be led by expert medical opinion, supported by the courts.”
Vice President Mike Pence referred to Charlie’s case during an interview on Rush Limbaugh’s radio show on Monday, adding fuel to the fire in an entirely different way. “We hope and pray that little Charlie Gard gets every chance,” he said, “but the American people ought to reflect on the fact that for all the talk on the left about single-payer, that’s where it takes us.”
Back in Court
On July 7, GOSH applied to the High Court for a new hearing in light of other doctors’ claims that the treatment may help Gard. While not changing its views on the treatment or its effect on Charlie, the hospital acknowledged statements made by doctors in the United States and Vatican hospitals and is willing to explore the claims that the treatment would benefit Charlie.
The following Sunday, Gard and Yates presented a 350,000-signature petition urging the hospital to allow their son to travel to the U.S. for treatment.
The July 10 preliminary hearing, prior to Judge Francis’ above ruling, was fraught with emotion, including an outburst from Chris Gard. “When are you going to start telling the truth?” he screamed at the lawyer representing the hospital. At a different point, when his own lawyer reported that a U.S. doctor estimated a 10 percent chance of saving Charlie with the experimental treatment, Yates asked the judge, “You would if it was your son, wouldn’t you?” Judge Francis assured her that he would take that into account during Thursday’s hearing. “I don’t think there’s anyone involved who wouldn’t want to save Charlie,” he added.
Two hours into Thursday’s hearing, there was another altercation between the judge and the parents. When Judge Francis paraphrased the parents’ earlier comments about not wanting their son to live if there were no prospect of improvement, Yates shouted, “I never said that” and reiterated that she did not think Charlie was suffering. She and her husband then stormed out of the courtroom but returned an hour later.
On Friday, Judge Francis said that Dr. Michio Hirano, a specialist in neurology at the Columbia University Medical Center, will evaluate Gard before the court makes its decision. According to The Mirror, a lawyer for GOSH stated the hospital invited Dr. Hirano to see Charlie back in January, but the visit never happened. In addition, Dr. Hirano reportedly never saw Charlie’s medical records or MRI scans, only summaries. He did, however, claim in his testimony (via video link) that Charlie has somewhere between an 11 and 56 percent chance of improving with the therapy. Judge Francis then determined that Dr. Hirano should travel to the U.K. and assess Charlie in person. He arrived early last week and met with several of Charlie’s GOSH caregivers and other specialists, including a doctor from the Vatican Children’s Hospital.
Judge Francis hopes to give his final verdict by July 25.
What started as one family’s tragedy has become a worldwide phenomenon. A combination of public appeals through social media and support from high-profile individuals has put Charlie and his family in the spotlight. It is difficult to say, though, whether or not this attention will help them in the end. Many cynical observers have wondered if politicians are taking advantage of the Gard family’s situation to push their own agendas. A variety of issues–from health care to government overreach to the right to life–will be shaken by the case’s final verdict. For now, though, Charlie remains on life support, and the world joins his parents in watching over him.