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Child Watch® Column: "Life and Death and Child Health Reform"

Release Date: August 14, 2009

Marian Wright Edelman

As a child, Devante Johnson's future seemed to be full of promise. He made excellent grades in school and was a help 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 we reported two years ago, her family's middle class security crumbled when her doctors told her she had Multiple Sclerosis and strongly urged her to leave her job because the stress of work would make her condition worse. With the dramatic loss of income and insurance, everything she was building began to slip away as she cashed in stocks and used money from her retirement fund to pay bills.

Fifteen months later, her problems worsened. Her oldest son, Devante, then 10, 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 to Devante's recovery. As a testament to his character, Devante remained upbeat and optimistic about the new treatment.

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 the life-saving care he required. 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 to allow her child's health care to continue without any interruption in coverage. One month before the deadline, she became concerned because she hadn't received notice that the application had been approved.

But there was still time she thought. However, to be on the safe side, Tamika Scott submitted two more completed applications, followed up with dozens of phone calls, and faxed supplemental information. 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 shortly thereafter, and his access to life giving care was cut off. His treatments immediately stopped.

Tamika Scott re-mailed and re-faxed 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 twenty 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 the application was lost in the system and had never been processed. With no where 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 M.D. 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 was 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. That's why I'm calling on each of you to join us now in demanding that Congress enact child health care reform legislation that simplifies children getting and staying enrolled in health care regardless of where they live in America.

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. Ultimately, the bill Congress passes must leave children better off than they are now, and in no case should any child be worse off. Congress is not there yet and they need to hear from you.