Child Watch® Column: "Choosing Which Children Live, Die or Suffer"

Release Date: May 25, 2007

Marian Wright Edelman

Health coverage in America shouldn't be like the stock market that dispassionately picks winners and losers. But insufficient funding of government health insurance programs combined with barriers limiting access to coverage has created a system where some children get health care and others don't. The result is that nine million uninsured children in America have become losers and are written off like a declining stock. This year, Congress must pass--and the President must sign--a bill that will provide easy access to comprehensive health coverage for all children.

It comes down to a life and death choice for children like Camilla Tecsy, 12, who requires daily therapeutic treatments and medication for Cystic Fibrosis, a disease that attacks her lungs and digestive system. Camilla is a bright, articulate child. She describes herself as a typical girl from New York City who likes to watch TV, talk on the phone and hang out with her friends. When she gets sick, however, there's nothing typical about what she has to endure. Fluid clogs her lungs and she struggles to breathe, suffering violent coughing spells. These bouts of sickness are accompanied by diarrhea and dramatic weight loss. Her lungs are left scarred putting her at greater risk of future attacks.

Camilla is not the only member of the Tecsy family with health problems. Her mother, Luminita, who is an office manager, has diabetes. Her twice-daily insulin shots are covered by her employer's health plan, but Camilla's father, Sandor, a colon cancer survivor, works as a taxi driver and has no health insurance.

Luminita and Sandor fled Romania when it was ruled by a communist dictator and came to America 30 years ago for a better life. Camilla and her older sister, Christina, were born in the United States. The family traveled to Hungary in 1997 after the fall of communism, and each of them was approved for full health insurance on the day they arrived. The promise of free health care induced the Tecsys to move to the Eastern European country for a four-year stay. Although Camilla was a U.S. citizen, she had the benefit of free doctor's visits and medication. In addition, Sandor had surgery for his colon cancer. When they returned to America, securing health care was a decidedly different matter.

Luminita has had to seek help from the Children's Aid Society to enroll her children in Medicaid through New York's Community Premier Plus program. But the family must pay the full cost of the program at $150 per child each month or a total of $300 a month, because Luminita and Sandor's combined incomes are between 250 and 300 percent above the poverty level (about $56,000 a year). While the Tecsys have little choice but to pay this costly premium, they cannot afford to cover the whole family. Thus, they had to make the agonizing choice of not buying health coverage for the father who requires monitoring and follow-up care.

In March 2007, Community Premier Plus officials denied a request for Camilla to receive Pulmozyme, an expensive therapeutic treatment taken with an inhaler to clear her lungs and enable her to breathe normally. For 12 days she suffered while her mother fought to secure this vital medication. Luminita had to make numerous calls to the state insurance office to get through to someone who would approve the child's access to Pulmozyme, and often got a recording with instructions to leave a message. "I didn't know where to go or what to do," she said. "I still don't know what's going to happen the next time that we're in the same situation." Luminita asked, "What will happen to my child? Is she going to die because somebody forgot to give the approval for her Pulmozyme?"

It is ludicrous that a family should have to leave the United States, the richest country on earth, to move their American-born daughters to an Eastern European country to secure uninterrupted health care. As long as there are barriers blocking eligible children from receiving health coverage for care, Congress and the White House, in effect, are saying to millions of uninsured children, "We choose not to cover your health care." Writing these children off can never be acceptable. Legislation must be enacted this year to guarantee comprehensive health services for all children and pregnant women in America. CDF supports a bill introduced by Congressman Bobby Scott (D-VA), the All Healthy Children Act (H.R. 1688), to achieve this goal. We must not delay. If we can throw half a trillion dollars at a war of choice in Iraq, we certainly have the resources to pay for the care of all our children. For more information, please go to www.childrensdefense.org/healthychild.