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Child Watch® Column: "Cause of Death: Bureaucratic Failure"

Release Date: April 20, 2007

Marian Wright Edelman

For too many of the nine million uninsured children in America, the lack of health coverage can literally mean the difference between life and death. Children are dying because their health coverage under Medicaid or the State Children's Health Insurance Program (SCHIP) ran out, was not renewed in a timely manner or simply does not cover the services a child needs. Some of these deaths occurred because attempts to gain access to health care are ensnarled in red tape. The impact of this oppressive bureaucracy on children is tragically illustrated by the death of Devante Johnson of Houston, Texas.

Tamika Scott, Devante's mother, didn't plan to rely on government supported health insurance to protect her children. At 29, she managed raising three boys while pursuing a career, buying a house and completing a college degree. Then her doctors told her she had Multiple Sclerosis and strongly urged her to leave her job for health reasons. She and her sons lost their private health insurance and she had to cash in stocks and use money from her 401(k) retirement fund to pay bills. Fifteen months later, the family sank even deeper into financial difficulty when her oldest son, 10-year-old Devante, was diagnosed with Wilms tumor, an advanced kidney cancer. Because of the family's reduced income, the six months of chemotherapy Devante received were covered by Medicaid. At the end of the treatments, the doctors pronounced him cured. But six months later the cancer returned. Devante and his mother were told that a new three-year course of chemotherapy, radiation and constant monitoring were critical to Devante's recovery.

Undeterred by this reversal, Devante proceeded with the new treatment with high hopes and the unwavering support of his mother. Two months before the expiration of the Medicaid coverage that was essential to the health-restoring care Devante needed, Tamika submitted an application for renewal to the Texas Department of Human Services. She was confident that there was more than sufficient time for the application to be processed to allow her child's health care to continue seamlessly. One month before the cutoff date, she became concerned when she hadn't received notice that the application had been approved. There was still time, she thought. Tamika Scott submitted two more completed applications—one of them through the Texas Children's Hospital. She followed up with dozens of phone calls and faxed information. But time ran out and Devant's health coverage was discontinued.

A month passed, then two. She inquired on numerous occasions as to the status of the application, but never got a satisfactory answer. For four months, no one in the Department of Human Services told her the application was lost in the system and had never been processed.

Devante's growing tumor become a visibly protruding lump on his back. His pain increased and walking became difficult. He lost twenty pounds. Yet Devante didn't give up. He never complained and was a comfort to his mother.  He remained an honor roll student who took advanced classes and looked after his younger brothers.

In desperation, Tamika Scott appealed to her state representative. Through his intervention, Devante's health coverage was restored in one day. He was transferred to the University of Texas M.D. Anderson Cancer Center where he received first rate, comprehensive care. All too late. This courageous 14-year-old died on March 1, 2007. The cause of death was complications from advanced cancer. But perhaps other causes were the obstacles and delays involved in navigating Devante's renewal application through a complicated bureaucratic system.

We must not let Devante's death be in vain. We need a national solution to the urgent child health problem. The Children's Defense Fund endorses the All Healthy Children Act (H.R. 1688), introduced by Congressman Bobby Scott (D-VA). The measure would consolidate Medicaid and SCHIP into one fully funded single program with guaranteed, comprehensive health and mental health benefits for all children and pregnant women with family incomes at or below 300 percent of the federal poverty level ($61,950 for a family of four in 2007). Under this measure, 5-6 million children currently eligible for Medicaid and SCHIP won't fall through bureaucratic cracks. Enrolling uninsured children in health care programs—and keeping them covered—would be streamlined with an automatic enrollment process and other simplifications.

The loss of children like Devante is disgraceful and unworthy of the nation America must become. Extending health coverage to every child in America can be achieved in 2007. We must stand against those who say we can't afford to cover all children this year. We must also stand against those who seek to phase in health coverage for all children over many years. Which of us would like our children to wait one, two, five or more years to get health care? The nation must embrace the moral and political will to save our children from unnecessary suffering and death. To help, go to www.childrensdefense.org/healthychild.