Reflections From an Insider on Charlie Gard and Socialized Medicine

Obamacare left many victims in its wake; then the GOP’s failure to float an alternative compounded the frustration. The result: A push for an American single-payer system is gathering momentum. When congress reconvenes next month, Senator Bernie Sanders is expected to introduce his “Medicare for All” bill, co-sponsored by Sen. Kamala Harris (D-CA) and polls suggest Americans, worn out by the health care wars, are growing more receptive to the concept.

But the awful story of baby Charlie Gard who was prevented from obtaining experimental treatment in the US by the British government, shines a spotlight on the failure of government rationed health care. It’s a failure that touched me all too personally. 

Five years ago my 18-month-old son Arturito was hospitalized for symptoms that at first looked like a severe cold. Then my wife Olga and I were given the shocking news: Arturito had mitochondrial depletion syndrome, a very rare condition for which no cure is known. “Take Arturito home now,” the doctors told us. “At least he can die a comfortable death at home.”

I couldn't accept this. I called pediatricians all over the country until I happened upon Dr. Michio Hirano, a professor of neurology at Columbia University Medical Center who was doing a clinical research study on treatments for this disease. Dr. Hirano has dedicated years to cutting-edge experimental work on the treatment of rare neuromuscular diseases and his treatments have been breaking barriers in the field of rare genetic muscular disorders. 

My son was fortunate enough to undergo this treatment — called nucleoside therapy — and today he is one of 16 children with the disease who have made significant progress. On Dr. Hirano’s regimen Arturito’s respiratory function and strength have improved noticeably. He can now move his fingers, hands, and toes, and sit (with support) at a 90 degree angle for 90 minutes compared to a 45 degree angle for 15 minutes previously. Most importantly, five years after we were told to prepare for his “comfortable death,” my son is alive.

I have since joined Dr. Hirano, who is also father of two young girls, and become an advocate for this protocol.

My role as an advocate for MDS children brought me to the Great Ormond Street Hospital (GOSH) in London and to the bedside of another baby with a similar strain of MDS, 11-month-old Charlie Gard. I visited with Charlie’s parents and I shared word of my son’s improvements with Dr. Hirano,

Connie Yates, Charlie’s Mom, feared the British system. She wanted to bring Charlie to America to be treated by Dr. Hirano. She even raised funds for a flight to the U.S. with contributions from over 83,096 individuals and entities.

The doctors were unmoved — fixed in their belief that Gard should, as they put it, “die with dignity.” GOSH followed their pre-determined government regulations, and when Charlie’s parents petitioned to take Charlie to the United States, the hospital took Charlie’s case to court because in the U.K., the judicial system handles these rare and complicated medical cases. The hospital can request the power to remove life support. And this is precisely what happened to Charlie. His doctors fought for him to “die with dignity” instead of fighting for him to live. To further complicate the matter, the court appointed an attorney for Charlie, an attorney who also represented an organization called “Compassion in Dying,” a close relative of the "Dignity in Dying" organization which, as the Daily Telegraph describes it "campaigns for a change in the law to make assisted dying legal in the UK."

Americans have been shocked by the Charlie Gard case. For all our health care system’s faults, it does not interfere with personal decisions on this level. Americans are allowed to help their children fight for a chance at life. In the U.K., by contrast, the state had veto power.

Americans who say they would welcome a “single-payer” system should consider the Gard case. It’s a clear example of the workings of socialized medicine. Currently the health-care system in the U.K. safeguards hospitals’ bottom line, rather than focusing on a patient’s medical plan. Hospital expenditures are carefully monitored by government. Charlie’s hospital in London reported Charlie’s life prognosis based on antiquated technology. In July, for example, an American expert (whose name has not been published for legal reasons) testified before the High Court about new clinical data on the benefits of nucleoside therapy that had not been available when he testified before them in April. Meanwhile, GOSH has steadfastly maintained that Charlie Gard's brain damage was more severe than children in Hirano’s clinical trials and thus that Hirano’s data did not apply.

Under socialized medicine, American medical services would be solely administered by government. Funding for these services would come from philanthropy, or worse, taxation. The imposition of taxes will create a government bidding system for medical services and supplies, increasing costs. The existing relationships between doctors and patients would shift, as well, and reporting requirements for specialized treatments would disrupt individual privacy.

We are already getting a taste of this through the detestable Obamacare feature of Independent Payment Advisory Board (IPAB), better known as the so-called “death panel.” IPAB makes health-care payment decisions independent of patients and their doctors. This board is independent of hospitals, Medicare, Congress, the judiciary system, the democratic process, and, ultimately, the Constitution. This board consists of 15 unelected bureaucrats confirmed by the Senate. IPAB submits recommendations to Congress to prevent a high growth of national health-care expenditures. Essentially, they micromanage our health care with rules outside of our control.

If my son were a British citizen, we wouldn’t have had the choice to try the experimental medications which have saved his life.

We must come together as a nation to improve our health-care system and share the benefits it creates for humanity. If we move towards even more of the centralized rationing that characterizes socialist care, we will not be able to do so.

In death, Charlie teaches us that states should pursue patient-centered, market-based reforms. We need a market-based competitive health-care system to sustain reasonable and affordable plans for everyone regardless of their illnesses. Governments and courts should respect the privacy and the will of our loved ones.