In late July, Charlie Gard, the baby stricken with the rare and typically fatal genetic disorder known as Mitochondrial DNA Depletion Syndrome, died. Charlie was at the center of a legal battle between his parents and the British healthcare system over who ultimately had the authority to decide if, and when, to remove the infant’s life support. The story garnered international attention because of the ramifications stemming from the court’s decision to remove Charlie’s life support; not the least of which was the alarming degree of authority wielded by Britain’s government-run healthcare system in overriding the wishes of Charlie’s parents.
Tragically, Charlie is now gone. In the meantime, a remarkably similar story is now beginning to unfold in the United States.
Russell Cruzan III is a four-month-old baby from Michigan who suffers from a variation of the same rare condition as Charlie Gard. The similarities, however, don’t end there. Russell’s parents, like Charlie’s parents, have vowed to do everything in their power to treat their baby. They are pursuing an experimental treatment with leading specialists in the United States just as Charlie’s parents did. Russell’s parents are also in the process of raising the funds necessary to cover their fight to prolong their son’s life, as did Charlie’s parents.
Given all these similarities, what’s the significant difference between these two cases? Russell’s care will be administered under the auspices of a free-market healthcare system in the United States, while Charlie’s care and medical outcome was subject to the bureaucratic nature of Britain’s socialized healthcare system.
The Gard and Cruzan cases demonstrate the stark difference in the overall philosophy and approach underpinning the two healthcare systems. In the U.S. system, Russell’s parents are pursuing a path they think is in the best interests of their child but doing so without any interference from administrators, lawyers, judges, or healthcare bureaucrats. The decisions on Russell’s treatment, quality of life, and very likely end of life will ultimately rest in his parents hands. In the U.K. system, Connie Yates and Chris Gard, Charlie’s parents, were afforded none of the same opportunities.
This profound difference between the two nearly identical situations lies at the heart of why socialized healthcare falls short of its claim to put patients first.
Healthcare in the United States, despite its flaws, still represents the world’s best example of a patient-centered medical system. While pundits, politicians, and policy-makers debate what the healthcare system should ultimately look like and how to enable greater patient access, these two cases have clearly shown that a move toward a more socialized healthcare system is not the answer.
Russell Cruzan III has a long and difficult road ahead: a life-threatening condition, an experimental treatment, and costly care. It’s a long shot for the Cruzan baby on all counts; nonetheless, every step of the way decisions on what is best for Russell are right where they belong—in the hands of his parents.