On Monday and Tuesday of this week (July 17 and 18), Michio Hirano, M.D., the noted Columbia University physician, examined 11-month old baby Charlie in a case that has gained worldwide attention . Baby Charlie suffers from a rare genetic disease, mitochondrial DNA depletion syndrome, that is considered progressive and terminal. He is being kept alive on life support at a hospital in London.

Charlie Gard has, in effect, been medically kidnapped by the socialist National Health Service bureaucracy that has lined up with the British medical establishment to assert the primacy of the state’s rights over the parents’ rights to determine the fate of a minor child. In Britain, the state essentially owns the child, and the experience faced by Charlie Gard and his parents has brought that outrageous situation clearly to light.

Reportedly ignoring Dr. Hirano’s opinion after a five-hour meeting and the physician’s examination of the baby, Charlie’s English doctors, who work for the government under the National Health Service (NHS) the UK’s single-payer socialist medical system, continue to maintain that there is no hope for Charlie and that he should immediately be disconnected from life support systems, which would quickly result in his death. Ever since Charlie’s medical condition was first diagnosed last fall when he was three months old, his parents have sought second opinions, and one has been provided by Dr. Hirano, an esteemed specialist in the United States whose work on children with illnesses like Charlie’s has shown great promise and has gained international recognition in the mainstream medical and scientific community.



Michio Hirano, M.D.

The English court system has been enlisted to reinforce the doctors’ clinical opinions and has taken the additional draconian step of preventing Charlie’s parents from taking their son to the United States for treatment at Columbia University Medical Center in New York, where Dr. Hirano and his team are engaged in leading edge U.S. government-supported research and experimental treatment of affected children.

Connie Yates, Charlie’s mother, was quoted in the Daily Mail on July 18: “As Charlie’s loving parents, we are doing the right thing for our son in exploring all treatment options.” Yates provided the newspaper with a new photo of Charlie that she said proved that he can see. His British physicians claim the child is blind.



New photo of Charlie Gard with his eyes open

The story of Charlie and his future is an emotionally wrenching one, as ordinary people with common sense on both sides of the Atlantic cannot understand why the British government, or any government in a supposedly free and democratic society for that matter, would work to prevent dedicated and loving parents like Charlie’s from taking rational steps that might possibly help their baby. Dr. Hirano is not some obscure quack or marginal figure, but one of the most recognized and respected physicians and researchers in the world. That apparently does not register with the socialist hacks who run the UK’s medical and political establishment, almost all of whom have lined up in a united front against the parents.

Dr. Hirano and his work were initially brought to the attention of Charlie’s parents, Connie Yates and Chris Gard, by Arthur Estopinan of Baltimore, Maryland, the father of a child who is afflicted with the same condition as Charlie’s. Estopinan’s son Arturo was treated with experimental therapies by Dr. Hirano and is alive six years later and steadily improving, according to his father.



A recent photo of Arthur and Olga Estopinan and their son Arturo

CNN Wire reported in an article on July 18 posted at Oklahoma City NBC affiliate KFOR’s Web site,

“Estopinan was initially told by doctors that his son would die a few months after his diagnosis [in 2011] and that there was no medical treatment for his condition.” According to Estopinan, the experimental treatments by Dr. Hisano and his team “allowed [Arturo] to get stronger by moving his arms, his fingers, his legs. He’s even trying to move his hips.”

On July 13, prior to examining Charlie in London on July 17 and 18, Dr. Hirano testified to a British court that his therapy offered between an 11 and 56 percent chance for clinically meaningful improvement in Charlie’s condition.

Nonetheless, according to reports published on July 18, the British doctors are holding firm in their judgment that Charlie’s case is hopeless and that the parents have no right to take him to New York. The final decision on Charlie’s fate now rests with the British High Court. The judge hearing the case in that venue has promised to render a decision by July 25.

It Can’t Happen Here – Or Can It?

Meanwhile, American readers might be wondering, Can this kind of thing happen here? Answer: It already has – maybe in not exactly the same kind of case as Charlie Gard’s but in numerous analogous ones.

For example, it has been the practice in the United States since the 1970s for courts to become involved when parents of a minor child want to pursue an alternative, unconventional, or innovative therapy for their sick child – counter to the advice of the child’s conventional doctors. Typically, at that point when the parents express an interest in an innovative option, the child’s original physicians and/or the local hospital enlist child protective services and/or take the case to an American court in an effort to charge the parents with neglect. The purpose is to wrest custody from the parents and place the child in the hands of state officials so that he or she can be treated with conventional therapies.



Chad Green, Playas de Tijuana, Mexico July 1979 Photo © By Peter Barry Chowka

The most famous case of this kind of many that I reported on involved Chad Green, a toddler with leukemia, who was “medically kidnapped” by the state of Massachusetts in 1978 in order to enforce chemotherapy treatments over the parents’ preference for nontoxic metabolic therapies. Instances of this kind throughout the United States are common to this day but are seldom reported on by the media.

In the 1970s, the U.S. medical establishment gained more power over parents in instances of this kind involving minor children. As William Ginsburg, one of the Greens’ attorneys, told me in 1979, “It’s proper for courts to determine if parents are competent. It is not proper for the courts to make medical decisions.” Ginsburg should have put his comments in the past tense, as in “It was proper. . .” – because starting in the 1970s, American courts making medical decisions became the status quo.

In 1979, commenting on the case of Chad Green and others like it, noted attorney Benedict FitzGerald told me, “It’s going to be terrible now if every time there’s a new medical treatment people have to go down to the courthouse and have some judge who might or might not be competent decide what a person’s medical treatment is going to be. There is no unanimity among medical people about the treatment of virtually anything. There are always dissenting opinions.”

The state’s actions to compel this or that treatment “apparently are something new,” FitzGerald commented. Only half jokingly, he added, “It looks like the courts will have to move right into the hospitals to decide many of these cases.”

FitzGerald, who practiced law in Cambridge, Massachusetts for many years, is a figure of considerable historic importance in the history of innovative medicine. He is the author of a seminal investigative report on alternative cancer therapies conducted on behalf of a U.S. Senate committee published in the Congressional Record in 1953. He concluded that a widespread conspiracy existed to suppress innovative alternative cancer treatments.

The situation of medical freedom of choice that Ginsburg and FitzGerald were weighing in on four decades ago is even more complicated today in light of the greatly expanded role of the government in paying for, mandating, and regulating health care. The recent accelerated political push for single-payer socialized medicine in the U.S. – as it has been practiced in the UK since 1948 – makes the outlook for the future of medical freedom of choice for parents and indeed for everyone even more problematic.

Update

On July 18, the House Appropriations Committee voted “to give lawful permanent residence to #CharlieGard so he can come to the US for world class medical care.” Permanent resident status was also granted to Charlie's mother and father. The vote was announced in tweets by several committee members, including Rep. Kevin Yoder (R-KS). The action came in an amendment to the Homeland Security Appropriations Bill. According to Fox8 in Washington, D.C. the “amendment to grant the family residency was passed unanimously in the House Committee on Appropriations on Tuesday, according to Congresswoman Jaime Herrera Beutler, who introduced the amendment. But it would need a vote from the full House and the Senate to become law.”

Herrera Beutler – whose own daughter was born with a rare and usually fatal disease but survived after treatment – said that the committee had “an incredible opportunity” to help Charlie Gard. “This amendment would speed up the process, cut through the bureaucratic red tape, and ease the path for Charlie to be able to receive medical treatment in the US that his parents and medical specialists believe is worth pursuing,” Rep. Beutler said in a statement.

The British media has been closely following developments in the case of Charlie Gard and is highlighting the story of the actions by the U.S. Congress, for example “Charlie Gard is given legal permanent residence in US by Congress so 'he can fly to the States for world class treatment’” in the Daily Mail. Along with Fox News and some conservative media in the U.S., the British press has been instrumental in publicizing the case of Charlie Gard. The media prominence, coupled with social media, has resulted in contributions from the public to the Gard family totaling, as of July 19, £1,339,160 of the original £1.3M goal at the family’s gofundme page, the purpose of which is to raise funds to support Charlie’s hoped-for medical treatment in the United States.



Amendment offering Charlie Gard and his parents permanent alien resident status in the U.S.

Peter Barry Chowka is a veteran journalist who writes about national politics, media, popular culture, and health care. His new Web site is AltMedNews.net. His July 13, 2017 one-hour interview on the Hagmann Report can be watched here.