02-18-2019  10:20 pm      •     
By Marian Wright Edelman
Published: 05 November 2009

What is a child's life worth? What is a child's health worth? What is a child's spirit, battered by preventable suffering and chronic disease, worth? What are a child's hope and ability to learn worth? What are the true values of the world's richest nation that is so spiritually poor that it even debates whether it can afford to give all its children the basic right to health care?

At the Children's Defense Fund, I hear far too much about indefensible child tragedies and suffering. It is way past time for parents, faith, national, and community leaders to tell our political leaders in no uncertain terms that child lives and health are not political or budget footballs and are not negotiable. Ensuring our children's health and wellbeing is our deepest moral responsibility as adults and as a nation – a test not only of our morality but of our common and economic sense.
Let me share one child's story sent to our Texas office by a pediatrician.
"A couple of years ago, I met a patient named Bert, a 16 year old boy. He was a big, blond guy who looked like he could have played for the high school football team. He was from a working class family living on the outskirts of Houston. His family could not afford health insurance, and he, like most 16 year olds, had been very healthy. In March of 2005, he started having chest pain. He didn't have a primary care physician or regular physical exams, so he went to an emergency room. Over the next seven months he visited five different emergency rooms throughout the city of Houston with the same complaint. Chest radiographs showed that there was some abnormality in his chest, but given that he had no insurance and the problem did not appear to be immediately life-threatening, he was not admitted to the hospital for further testing or treatment.
"Finally in October he appeared at Texas Children's Hospital with difficulty breathing. He was admitted to the hospital (under Emergency Medical Treatment and Labor Act laws, hospitals must treat patients with medical emergencies, regardless of ability to pay) and was found to have a tumor filling his entire left chest. He was admitted to the ICU and seen by critical care physicians and oncologists. Chemotherapy was initiated in an attempt to shrink the tumor so that it might become small enough to operate on. He was in the ICU for several weeks, but the tumor was already so far progressed that the chemotherapy did little to shrink it. Bert died less than a month later.
"Tragically, his tumor would have been treatable back in March when he first sought medical care. Instead he was pushed off for so long that the tumor grew to an unmanageable size. Furthermore, he ended up using very expensive emergency room services five times without actually getting the care he needed. Once he did get admitted to the hospital, he required intensive care unit treatment, ventilator assistance, and dialysis, at the cost of over $10,000 per day. With insurance, he might have been diagnosed earlier and treated successfully, and all this would have been done for less money."
Bert did not have to die. If he and his family had had health insurance he likely would have had the tests that might have discovered the underlying causes of his chest pains at the first rather than fifth visit. His parents would have been prevented unspeakable grief, and taxpayers would not have spent hundreds of thousands of dollars in too late intensive care.
I have written about a 14-year-old Black Houston boy – Devante Johnson – who had treatable kidney cancer but fell through the cracks of Texas' bureaucratic state child health system. Isn't it time for America to get its priorities straight and to protect all of its children in national health legislation this year so that children do not have to die or suffer because we refuse to provide them child health care?
Marian Wright Edelman is president of the Children's Defense Fund.


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