Politics & Policy

Why Charlie Gard’s Life Was Worth Fighting For

Supporters of Charlie Gard’s parents react outside the High Court in London (Reuters: Peter NIcholls)
The search for cures continues, and bureaucrats should not stand in the way.

Five grueling months went by as Chris Gard and Connie Yates battled with the U.K. courts for the right to fight for their son’s life. This week, they withdrew their petition seeking to bring Charlie to the U.S. for experimental treatment.

The fight for little Charlie’s life caught the attention of the world, and now commentators and talking heads are busy casting blame. The case can be made that the delay caused his death. At the very least, the drawn-out court battle deprived Charlie’s parents of the opportunity to see whether experimental treatment might have saved his life.

“A whole lot of time has been wasted,” Ms. Yates said, through tears. “We are sorry we could not save you.”

Regardless of blame, a little boy has lost his only chance at life. The heart-wrenching truth is that thousands of children around the globe die every day, for a myriad of reasons. But that does not lighten the weight of this death. The individual is what defines our humanity. Charlie’s short life is a reminder that every human life — no matter how great or small, young or old — has inherent dignity. Every life is worth fighting for.

And fight Charlie’s parents did: They raised more than $1.6 million to pay for their son to receive experimental treatment in the United States. They advocated fiercely. They refused to give up hope. In response, a renowned U.S. medical center offered to admit Charlie Gard and provide him with an experimental treatment. Representative Trent Franks and I introduced legislation to expedite the process of bringing Charlie and his parents to the U.S. in order for them to pursue their last, best hope for their son’s life.

Other members of Congress brought forward similar pieces of legislation. My friend Jaime Herrera Beutler, a congresswoman representing a district in Washington State, shared her own story of fighting for her unborn baby’s life after the child was diagnosed with Potter Syndrome, a condition that develops in utero when no kidneys form. Her doctor told her that the condition was 100 percent fatal and suggested abortion as the next step. However, Jamie and her husband did not lose faith. They found a doctor who was willing to try an experimental treatment. It was successful, and today Jaime’s daughter Abigail is four years old.

This is personal for me as well. When my little sister, Amy, was diagnosed with leukemia as an adult, the doctors told her that the only real cure would be a bone-marrow transplant. The insurance company refused coverage, though, on the grounds that it was an experimental treatment. Amy fought the company and successfully attained partial coverage, while paying the rest herself. We did the bone-marrow transplant, on her doctor’s advice. Today, 23 years later, Amy is married and the mother of two beautiful children.

Charlie’s short life is a reminder that every human life — no matter how great or small, young or old — has inherent dignity. Every life is worth fighting for.

My sister’s doctor and Abigail’s doctors were fighting for the lives of their patients. In contrast, Great Ormond Street Hospital was advocating for permission not only to withdraw treatment but also to block Charlie’s parents from taking him to get treatment in the U.S. The hospital bureaucrats argued that the experimental treatment was not what Charlie’s doctors deemed to be in his “best interest.”

This is a far cry from past medical cases in which doctors have interceded in order to provide a child with treatment over a parent’s wishes — with the justification of saving the child’s life. In Charlie’s case, it was the opposite. A little boy was being ordered to die because a third party, overriding the wishes of the parents, believed it could determine that immediate death was what was best for him.

The effect of any case like this ripple far beyond a single life. Not only would experimental treatment have provided the only chance to improve Charlie’s condition, it also could have offered the opportunity for Charlie to increase the chance of recovery for others suffering from this condition in the future. A cure begins with one.

Charlie Gard’s brave fight inspired individuals across the globe to join in his battle for life, for hope, and for cures. That will be his enduring legacy. His life should serve as a reminder that these principles must be the basis for any successful health-care system. As we debate health care here in the U.S., let us remember that any reforms we implement should be centered on improving health, preventing illness, valuing life, and striving for breakthroughs in treatments and cures. We should be encouraging — not inhibiting — innovation and experimentation in order to bring new cures and better care to the next generation.

Looking ahead, Charlie’s parents hope to establish a foundation to ensure that Charlie’s voice “continues to be heard.” As we stand with the family, let both our nations be reminded of the risk incurred when our health-care systems are endowed with ultimate authority to determine which lives are unworthy of being lived and who may be denied their own fight for survival.

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