Commentary—

Life And Death And Child Health Reform

By Marian Wright Edelman

As a child, Devante Johnson’s future seemed to be full of promise. He made excellent grades in school and helped around the house. His mother, Tamika Scott, worked hard, managing to raise three boys while pursuing a career, buying a house and completing a college degree. Mrs Scott had a 401(k) retirement fund and private health insurance and was confident she was prepared for unforeseen emergencies. At 29, she took comfort in the belief that her family was secure.

But as reported two years ago, her family’s middle-class security crumbled when her doctors told her she had multiple sclerosis and urged her to leave her job because the stress of work would worsen her condition. With the dramatic loss of income and insurance, everything she was building began to slip away as she cashed in stocks and her retirement fund to pay bills.

Fifteen months later, her problems worsened. Her 10-year-old son, Devante, was diagnosed with advanced kidney cancer. Because of the family’s reduced income, the six months of chemotherapy treatments Devante received were covered by Medicaid. At the end of the treatments, the doctors pronounced him cured. Six months later, the cancer returned. Devante and his mother were then told that a new three-year course of chemotherapy, radiation and constant monitoring were critical. Despite this, Devante remained upbeat.

Tamika Scott didn’t plan to rely on government-supported health insurance to protect her children, but she had no other option. Devante’s Medicaid coverage was essential for him to receive life-saving care. Two months before the expiration of his Medicaid coverage, she submitted an application for Medicaid renewal to the Texas Department of Human Services, confident that two months was more than sufficient time for the application to be processed. But one month before the deadline, she hadn’t received notice that the application had been approved.

To be on the safe side, Tamika Scott submitted two more completed applications, followed up with dozens of phone calls and faxes. After six weeks, she found out that Devante’s Medicaid application had not been approved and that it was going to be sent for verification of eligibility in the Texas Children’s Health Insurance Program (CHIP). When she contacted the CHIP agency to check the status of Devante’s application, she was repeatedly told they hadn’t received it. The expiration date for Devante’s coverage came quickly, and his treatments immediately stopped.

Tamika Scott remailed and refaxed the application as she watched her son get sicker with no way to get him the treatment needed to save his life. Devante’s growing tumor became a visibly protruding lump on his back. His pain increased and walking became difficult. He lost 20 pounds. He had to rely on free samples of experimental drugs as the only treatment available to him. But he didn’t give up and never complained.

Mrs Scott inquired on numerous occasions about the status of his application but never got a satisfactory answer. For four months, no one in the Department of Human Services told her that the application was lost in the system and had never been processed. With nowhere else to turn, she 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 MD Anderson Cancer Center where he received first-rate, comprehensive care. But it was too late. Devante Johnson, courageous to the end, died on March 1, 2007. He was 14. The medical cause of death? Complications from advanced cancer.

He also died from a shameful and preventable failure of state and federal systems and the lack of a commitment to make sure every child in America gets the health coverage for which they are eligible.

To avoid more deaths like Devante’s, access to health care must be simple and seamless. Currently, six million of the nation’s nine million uninsured children are eligible for but not enrolled in Medicaid and CHIP largely because of state-imposed barriers that Congress can and must eliminate this year. These include known obstacles to enrollment like waiting lists and face-to-face interviews. The bill Congress passes must leave children better off than they are now, and in no case should any child be worse off. But Congress is not there yet and needs to hear from you.

(Marian Wright Edelman, whose new book is The Sea Is So Wide And My Boat Is So Small: Charting a Course for the Next Generation, is president of the Children’s Defense Fund.)