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. We are spending tens of billions annually to hurt millions of children by neglect rather than invest in cost effective prevention and early intervention and in a child health system that really works rather than excludes millions of children. Let me share just one child’s story shared with our Texas office by a pediatrician. His name was Bert.
"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. He should not have died. 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. Repeatedly lost applications and confusion about which program, CHIP or Medicaid, he was eligible for resulted in Devante going three months without life-giving treatment during which time his tumor grew and, like Bert’s, became inoperable.
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 Bert and Devante and all the other children we hear about do not have to die or suffer because we refuse to provide them effective and cost effective child health care? Isn’t it time for you to tell Congress to act right now and not leave millions of children worse rather than better off in national health reform? So far, they have not taken sufficient steps to do so and you and I must change that.
We need to end the bureaucratic barriers that keep two out of three of the 8.1 million uninsured children, already eligible for either CHIP or Medicaid, from actually getting the care they need. A simple, seamless enrollment process like older Americans have for Medicare would ensure all our children are cared for. It would have helped Devante. We need to guarantee every child access to the full range of preventive and other health care services they need and that we now provide to Medicaid children but not to all children in CHIP or in the proposed Exchange.
A child covered by CHIP or the Exchange has the same value as a child covered by Medicaid and all deserve comprehensive care regardless of the program they are in. And we need to provide an affordable national health safety net for children whose families make up to 300 percent of the Federal Poverty Level ($66,150 for a family of four) and eliminate the unjust lottery of geography. Texas has nearly 1.5 million uninsured children – the highest in the nation. Whether a child’s family can afford coverage should not depend on where they live. New York covers children up to 400 percent of the Federal Poverty Level ($88,200); North Dakota only to 160 percent ($35,280); Massachusetts and twenty-one other states, plus the District of Columbia at 300 percent; and Texas at 200 percent ($44,100). A child is a child wherever they live – North Dakota, New York, or Massachusetts. Treat them all fairly.
The lives and health of millions of children depend on real child health reform this year. They will not get what they need unless you and I speak up and demand it. Children have no other voice but ours. Lift it high and loud and make sure you vote next year for people who vote for – not talk about - children. Grab your strollers, your scooter, and your walking shoes, and visit your Senators in November and December and for as long as necessary to make Congress treat our children justly. Send emails, letters, and calls until our children’s message gets through. Children have only one childhood. Let’s ensure they enjoy rather than lose it. To learn how to take action, visit CDF’s website: www.childrensdefense.org.
Marian Wright Edelman is President of the Children's Defense Fund whose Leave No Child Behind® mission is to ensure every child a Healthy Start, a Head Start, a Fair Start, a Safe Start and a Moral Start in life and successful passage to adulthood with the help of caring families and communities.