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

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.”

Employees sometimes brought their infants with them to work at the Circus Circus casino in Reno where Tammi Howard was working as an assistant in a circus aerial act in 1980. So when Howard, who was not married, gave birth to Coby on April 22 of that year, she figured he could be a casino kid too.

But the first day she went backstage with her new baby, the workplace looked different. Suddenly it seemed “too loud and too dirty,” she said. So she quit her job and moved to Portland “so Coby would have clean air and a healthy environment.” She now laughs ironically at the notion.

A Second Child

While living in a government-subsidized, $47-a-month apartment in Rockwood, a suburb of Portland, Howard had a second child, a girl named Taylor, now 4. Howard and the man she has lived with for three years, Greg Adams, also have a 6-month-old son, Jordan.

For Coby’s 6th birthday, his mother said, she got him a bicycle. She recalled mentioning to Adams that she was concerned because the child always seemed to be crashing his bike and accumulating bruises. Adams reassured her, she said, saying that little boys are constantly getting bumps and scrapes.

Then one night Coby fell off his bunk bed and hurt his leg. Howard took him to Emanuel Hospital and Health Center. She was nervous, she said, because she thought the doctors would notice Coby’s bruises and suspect her of child abuse.

“The doctor called me in and asked me where he got those bruises,” Howard said. Responding to what she thought was the doctor’s insinuation, she forcefully denied that she ever struck the boy.

“No, no,” the doctor said. “There’s something wrong. These are not normal bruises.”

A diagnosis of leukemia was made in the summer of 1986. Coby’s life became a round of chemotherapy, radiation, surgery, blood transfusions and other procedures. He especially dreaded the painful bone marrow aspirations, in which a needle is inserted in the bone cavity.

“No more pokes, mama,” he would plead.

For enduring the tests, he would be awarded by hospital staff with a toy. Howard said he would either give it to his baby sister or leave it at the hospital for the next young patient to enjoy. “He was compassionate for a child,” she said.

Leukemia Under Control

In the month after Coby’s initial diagnosis, doctors were able to bring his leukemia under control. But after a year of remission, the disease resurfaced in August. He was treated for four or five days in the hospital and stabilized again.

During the most recent remission, Coby’s doctor, Sarah Fryberger of Portland, suggested an autologous transplant. In such transplants, much of a patient’s own marrow is removed and stored before intensive chemotherapy, which otherwise would destroy it. The marrow is then reintroduced into the patient’s body after the treatment. (Neither Howard nor Coby’s two half-siblings were able to act as bone marrow donors.)

Even Strangers Contributed

As soon as Howard got word from Fryberger that she had to raise $100,000--about average for a bone marrow transplant--she called her mother, sister and brother, and they in turn asked their churches to take up donations. Local TV stations got in the act and strangers began sending in small sums of money.

Coby’s first-grade class at Davis Elementary School sold pins and stickers, raising $300. The Rockwood Machine Shop opened for business on Saturdays and Sundays and donated the cost of their labor to Coby’s cause. More than a dozen high schools in the area competed to raise cash, and local businesses advertised the campaign on their outdoor signboards: Save Coby.

Coby’s hair, once thick and brown, was reduced to a few wisps, and his normally thin face became bloated from the effects of his treatment. Every day, his mother said, he would sit at the kitchen table and color in squares on a chart showing how much closer to the $100,000 goal he had come.

Coby’s transplant was to have been performed at the Fred Hutchinson Cancer Research Center in Seattle. Although the center has no “hard and fast rules or any firm cutoffs” for determining how much money a patient must have on hand before an operation can begin, spokesman Alice Burgess said, the hospital probably would have performed the bone marrow transplant if it “looked like the potential was there” for the family to raise the money.

Unwilling Celebrity

Coby became an unwilling celebrity as many Portland residents followed his struggle through coverage in their local newspapers. “He didn’t like cameras. He was on display,” his mother said. Coby told her he didn’t like to go outside anymore because he looked like an old man.

Yet, Coby was being seen by more people than ever before. When pressed by the patrons of a local restaurant, the sick boy got up on stage with the band and sang “Rudolph the Red-Nosed Reindeer.” He watched himself on the local TV news, showing no emotion as commentators called him “the 7-year-old Rockwood boy who will die if he can’t raise the $100,000 needed for a bone marrow transplant.”

The family had made a preliminary visit to Seattle on Nov. 19. At that time, a sample of Coby’s bone marrow was taken. Doctors discovered that it was no longer free of leukemia cells, and told Howard that they would have to wait until chemotherapy forced the leukemia into remission again before going ahead with the transplant.

Dr. Rainer Storb, head of the transplantation biology program at Hutchinson, said there was no point in removing Coby’s bone marrow at that point because “all you would be storing is diseased bone marrow.”

Sits on Santa’s Lap

On the Saturday after Thanksgiving, Coby had his picture taken sitting in Santa Claus’ lap at a local shopping center. He also bought a Christmas present for Greg Adams. Coby vomited a few times that day, but Howard didn’t think that was anything particularly ominous.

The next day, Coby was admitted to Emanuel Hospital, suffering from dehydration. His condition deteriorated over the next three days.

The final words Coby said to his mother on the morning he died were delivered as an imperative, not as a request: “Mama, don’t cry no more.”

The Howard family lives in a tidy apartment in a complex where many children reside, judging from the bicycles and toys on the lawn. On a recent snowy afternoon, baby Jordan lay on his back on the living room carpet, juggling a balloon with his feet.

Howard, animated, sat on the couch beside Greg Adams, who barely spoke during an interview and kept his eyes on the images on a silent TV screen. In one corner of Howard’s living room was a fat, tinsel-streaked Christmas tree.

“I’m kind of sitting here waiting for someone to tell me where to go with this,” Howard said. “I need to see the law changed to have any peace of mind.”

Howard may get her wish. Two Oregon state representatives have urged that the state restore funding for transplants. And, according to Connie Easter, the Oregon Health Decision Committee intends to address the transplant issue in public forums that will help decide how state health care dollars should be spent in the future.

Another Cancer Patient

The money that was intended to help Coby Howard was given by his mother last Wednesday to a 21-year-old cancer patient, another Oregon resident affected by the state’s decision not to fund transplants.

The woman, Twila Bozeman of Hillsboro, Ore., had not bothered to apply for a transplant, knowing it would be denied by the state. She has Hodgkin’s disease and is due for bone marrow storage at Hutchinson Cancer Center today, in preparation for an autologous bone marrow transplant.

The transplant has yet to be scheduled, because the hospital has not indicated whether it will deem the $70,000 sufficient advance payment for the $100,000 procedure, according to a spokesman.

While she awaits that decision, Bozeman is busy trying to raise the rest of the money.