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A Transplant for Coby : Oregon Boy's Death Stirs Debate Over State Decision Not to Pay for High-Risk Treatments

December 28, 1987|ANN JAPENGA | Times Staff Writer

ROCKWOOD, Ore. — When a doctor told Tammi Howard last month that her son, Adam (Coby) Howard, qualified for a bone marrow transplant if she could come up with $100,000 in three weeks, she was "so happy," she said. "I hadn't been that happy since Coby got sick."

Howard, 28, says she considered a transplant almost like the promise of a cure for her 7-year-old, who had been diagnosed with acute lymphoblastic leukemia in June, 1986, and who was then in remission. She understood that a transplant would give Coby a 50% chance of living--wonderful odds, in her opinion. (Estimates of longevity vary, and a doctor at the hospital where the operation was to have been performed says Coby's chances would have been closer to 20%.)

Although she is unemployed and on welfare, Howard said she felt confident she could find a way to raise the money if it might mean the difference between life and death for Coby.

Until recently, the state would have paid for the operation through the Medicaid program. But in July of this year, Oregon ruled that it would no longer finance costly bone marrow, pancreas, heart or liver transplants. The state continues to pay for cornea and kidney transplants, which are less expensive and have a high rate of success.

So Howard's friends and neighbors raced to raise the required sum through bowl-a-thons, skating parties, paper drives and garage sales. They collected $70,000 by the scheduled date of the operation, Nov. 25.

But at the same time, leukemia cells were re-invading Coby's bone marrow. The operation had to be postponed until the cancer could be forced back into remission. Before that could happen, Coby Howard died in his mother's arms at Emanuel Hospital and Health Center in Portland early on the morning of Dec. 2.

By the time he died, Coby Howard had become one of the country's most emotional and visible symbols of the debate over state decisions to limit Medicaid funding for transplants--a debate that weighs the high cost and uncertain effectiveness of transplants for the few against tight budgets and programs that serve larger numbers of people.

In Oregon, four more people have been denied transplants since the July ruling, according to the Adult and Family Services Division, which administers welfare in the state.

"That was Coby's purpose in life, drawing attention to this issue," Tammi Howard said, even as she acknowledged that the fund-raising efforts were futile in the end: "Even if we had all our funds, we couldn't have gone ahead with the transplant."

But in her son's last weeks, she added, she would have liked to take him to the movies, out to restaurants, to the wintry coast, and to the dinosaur exhibit at a Portland museum. Instead, the boy and his family spent those weeks scrimping and struggling to gather money. "It was all-consuming," she said.

"I do not intend to pass responsibility for his death on," she added, "but I do believe that they (the state) should have assumed the responsibility while he was alive."

According to a survey conducted by the Virginia State Department of Medical Assistance Services, Wyoming is the only state that doesn't pay for organ transplants. Other states are starting to impose restrictions on transplant procedures, said Gregg Zody, the state planner who conducted the study.

Seven of the 45 states included in the survey do not cover bone marrow transplants; 15 will not pay for heart transplants. California does not reimburse for heart-lung and pancreas transplants, which it still considers investigative or experimental.

Connie Easter of Oregon's Adult and Family Services Division said the state's funding limits were set at a time when the economy was weak, with "a lot of people out of work and a lot of people in need."

"Many people believe that we serve everybody in need, but we don't," she said. "We have limitations."

Easter pointed out that it's not just welfare recipients who suffer for want of transplant funding, because some insurance companies also do not cover various transplant procedures.

Preventive Medicine

The idea is to distribute the money among a greater number of people and channel it into preventive medicine, rather than funding expensive, last-ditch operations for a few, she said.

About $2.2 million would have been needed to fund an estimated 34 transplants in Oregon in 1987, she explained. Instead, the agency diverted the funds into four programs serving greater numbers of people. One of the programs alone, she said, will provide 1,500 women with prenatal care.

"It was a tough decision. Very tough," she said.

Easter says she has a photograph of Coby Howard in her office and she looks at his face daily to remind her "of the importance of the decisions we make."

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