A Matter of Life and Death   

Media coverage can play a large role in helping people pay for organ transplants, and sometimes in determining who gets them. To get that coverage, it helps to be a cute child.

It was, as they say, every parent's nightmare.

Simon Fischler, a healthy, athletic 15-year-old, collapsed in his doctor's office last June and was rushed to intensive care. Tests revealed that Simon had cardiomyopathy, a deadly disease that eats away the heart muscle. His only hope: A new heart.

Overnight, Simon's parents, Shirley and Stan Fischler, stepped from one world, with its comforting daily demands of work and family, into another, where they were forced to sit and wait for the miraculous news that a donor had been found. "It had been an absolutely earthshaking shock," Shirley recalls, "because this had been a healthy kid." Doctors blamed a virus and put Simon on heavy medication, saying that because his health was dwindling daily he had priority status for a transplant.

Stunned, Stan and Shirley did all they could--lining up a letter from their health insurance company authorizing payment for a transplant, taking turns staying with Simon at the hospital and attending meetings with families who had been through the same agony. The last thing the Fischlers wanted to do was open up their lives to the media.

But when the parent of another organ recipient pleaded with Stan to take his son's story to the press, he began to think a little publicity wouldn't be so bad. If nothing else, stories in the media might raise public awareness of the need for organs.

One night, after meeting with other parents at the hospital, Stan went home and banged on the door of his neighbor, Anemona Hartocollis, a reporter for Newsday. The story of Simon's plight touched the writer, snd it had an element that helped elevate it above the B-section. Not only was Simon an avid street-hockey player who dreamed of being a National Hockey League goalie, as Hartocollis wrote in an August 2 article for Newsday, but his parents were hockey celebrities. Stan was "the hockey king--known to millions as the cable commentator on the New York Island-ers and New Jersey Devils," she wrote, and Shirley "probably the only woman ever to have done hockey commentary on national TV."

When the article appeared, Simon had been hospitalized for about a month. Within days he had a new heart.

Much has been written about the inequities of the health care system: Some patients have access to the latest in medical technology while others get nothing at all. Some diseases attract widespread sympathy and massive research funds, while others are ignored.

What often gets overlooked, however, is the pivotal role the media can play when it determines who will get attention and who will not in the newspapers or on TV. The decisions reporters and editors make in deciding which patients' stories merit page one treatment and which are merely "routine" may mean the difference between life and death.

While there are regulations in place stipulating who has priority in receiving available organs based on the urgency of each case, publicity may increase a recipient's chances of finding an organ by prompting a direct donation from a donor who might not otherwise have done so. It can also have a critical effect on a family's financial situation, making it easier for them to raise money for the costly operation, or pressuring insurance companies to pay for more risky, or controversial, transplants.

Congress addressed some of the early inequities of the organ marketplace with legislation enacted in 1984. The law created the United Network for Organ Sharing, a Richmond, Virginia-based nonprofit that maintains a central computer list of patients. The list, which was started in 1987, was supposed to remove some of the pressure on families to find organs via sympathetic news coverage.

Transplant professionals stress that coverage of individual cases can in no way influence how quickly a potential recipient moves to the front of the line. Priority is determined by the severity of the person's medical condition, length of wait, blood type, weight and other factors.

Beyond medical reasons, patients can't get on the list unless they can prove the ability, or their insurance company's willingness, to pay for the operation. With the exception of kidneys, the federal government doesn't pay for transplants, so uninsured families are still at the mercy of the media to make or break a fundraising drive.

There is probably no better example of the arbitrary nature of media attention to patients in need of organ donors than the surreal world Simon Fischler inhabited last summer.

Here's how Newsday's Hartocollis described him: "Simon lies in bed at the Columbia-Presbyterian Medical Center in Manhattan, tethered to intravenous tubes, his body wasted, his face still angelic, surrounded by letters and photos from the hockey stars his father has covered all those years, knowing that chances are better than even he will die before he even gets to the operating table for a heart transplant."

Thousands of readers pored over the Newsday account of the brave kid who found himself at the mercy of an organ marketplace where demand is great and the supply is small. Unfortunately the media can't cover all 34,000 Americans nationwide who await organs. According to Laurence Swasey, spokes-person for the New York Regional Transplant Program, in New York City alone, about 200 need hearts.

A heart transplant recipient and former reporter himself, Swasey is a passionate believer in publicity, and when he learned about the Fischlers he quickly got on the phone to sportswriters. "Stan is the hockey maven. It allowed newspapers to put a new angle on it," Swasey says. The New York Post covered Simon's story, as did all three TV network affiliates and a number of radio stations.

On August 6, just hours after Simon was scheduled to return to intensive care because his condition was worsening, a heart became available. "The heart came from an athletic person upstate," Shirley says. That's as much as the Fischlers know. The donor family chose to remain anonymous, and there's no way of learning whether the donor or his family had ever heard about Simon and directed the donation to him, or if the timing was just coincidence.

While it's impossible to measure the impact of Newsday's coverage, the fact that Stan was well-known indisputably helped raise overall awareness of the need for organs. Describing an NBC News camera crew on the scene as Simon left the operating room, Swasey says, "It was coverage like I've never seen before." Getting his family's story out was relatively easy: "It was a journalist," Swasey explains, "one of our own."

Transplants have been in the news since the early 1950s, an era of brave experimentation and widespread failure. A typical news story from that period reported that the surgery went well but then the recipi-ent's immune system rejected the organ. A miracle drug, cyclosporine, which was approved for use in 1980, made it possible to trick the immune system, vastly increasing success rates--and changing the emphasis of news coverage from medical wizardry to "waiting and hoping" pieces about individuals who needed transplants but couldn't afford them.

Kristi Krueger recalls tracking such stories when she was with WWSB-TV in Sarasota, Florida, in the late 1980s. In one case, the daughter of a police officer needed a liver, and Krueger reported about the community turning out to help the girl. It was the kind of story, she recalls, that a station in a smaller market like Sarasota couldn't ignore.

By the time Krueger landed at a Detroit station in 1990, however, there were so many instances of kids needing organs and money to acquire them that a family needed a special attraction to get on the air. The parents of a newborn, whose need for a heart transplant had been identified before birth, made the grade, Krueger recalls, because the patient was an infant and the operation was so unusual. As doctors hunted for an appropriate heart, reporters at Krueger's station strapped on beepers and loaded up their videocams for the inevitable footage of medical personnel rushing the tiny, fragile organ to the operating room.

Now a medical reporter with WPLG-TV, the ABC affiliate in Miami, Krueger says, "I'm always looking for a peg. If a hospital calls, I'll say, 'What's different? Is it a first? Is there a new piece of equipment [or something else] we can hook the folks in with?'.. I hate to sound callous, and it does sound callous when you take so many calls."

"My frustration with coverage," says Wall Street Journal reporter Scott McCartney, author of a forthcoming book about the politics and technology of organ transplants, "is it always ends with the surgery. The truth is that surgery is the easy part. What's hard is what comes later. It's a huge roller coaster ride, and a battle not just for the patients but the doctors."

It was during the mid-1980s that Deni Elliott, currently an ethics and public affairs professor at the University of Montana, became aware of the larger story behind transplant stories--starting with a front page article she wrote while on temporary assignment at the Philadelphia Inquirer in 1985.

Her subject was 29-year-old James Krause, a heart transplant patient at Temple University Hospital. Because this was neither an unusual operation nor a first at Temple, Elliott guessed it was destined for the "B section, page 23" unless she could find a hook. She found it in the fact that the patient's insurance company wouldn't cover the cost, touching off an energetic community fund-raising campaign that helped raise more than $100,000 and push forward a bill before the state legislature to pressure insurers to pay for transplants.

"My interest was in what happens to people who don't have money," Elliott says, "and the answer is, they die... It's de facto rationing depending on economic status."

Elliott went on to produce two short documentaries on the topic. "Case of Need" focused on the compelling story of Norma Lynn, a cute six-year-old girl from Maine who needed a new liver and was such a great human interest story that local TV stations were vying for the opportunity to join her on the plane to Pittsburgh for the operation; the winning station paid for the flight.

The publicity netted $100,000 in contributions, Elliott reported, in stark contrast to the yawn that greeted an unknown transplant patient from the same state who was staying two floors above Norma Lynn. When that woman, who had received a new heart and lungs, died, Elliott says, her husband was so broke he had to hitchhike home.

Elliott's second film, "Buying Time: The Media Role in Health Care" scrutinized coverage of two bone marrow transplant patients, one an attractive, media-savvy young woman who drummed up publicity about her insurance company's refusal to pay for the operation (the company eventually did, but not, it said, because of the ink), and the other a little boy whose impoverished mother couldn't get New Hampshire Medicaid officials to pay for a transplant until the local media shamed them into it.

The documentary "provides a good example of journalists doing the wrong thing for the right reasons, and of policy makers doing the right thing for the wrong reasons," Elliott likes to say about "Buying Time." Referring to the broader problem of a health care system that fails to distribute its resources fairly, she adds, "The journalists asked, 'How can you let this little boy die?' They didn't ask, 'How are the decisions made about how to spread out that limited Medicaid budget?' They didn't ask, 'Why is it so limited in the first place?' "

One newspaper that has made a point of covering the big picture is the St. Petersburg Times. In 1987, when most newspapers were concentrating on the child-needs-money-for-transplant story, the Times published a thoughtful, 1,740-word article about the ethics of "retransplanting," or giving one patient a crack at a second organ while others are in line for their first. (Statistically, there is much less chance of a second organ transplant working than a first.)

Five years later, a Times article told the compelling story of a cancer patient who sat down at the kitchen table with her husband to develop a media strategy that ultimately persuaded her insurance company to pay for a bone marrow transplant it initially turned down. The article included a chilling description of the executive director of the Organ Transplant Fund, then in Illinois, as someone able to mold prospective organ recipients "into neat marketable packages" and arrange their fundraising.

"If you are overweight or unattractive, older, a single man or a minority working in a low-pay area, you are in deep trouble," reporter Amanda Cropp observed. "Popular folks with links to community organizations are the lucky ones." By way of comparison, one 16-month-old attracted more than $40,000 in three months, while a "not attractive" 37-year-old bachelor with thick glasses struggled to raise $35,000 in 16 months.

A hard-hitting St. Petersburg Times series by Jeff Testerman, also published in 1992, focused on the organ procurement business, which is spread among 69 federally chartered organizations. Zeroing in on one such firm, LifeLink of Tampa, the series revealed that top officials were raking in big salaries while profiting from a business whose chief commodity--organs--are donated.

Last January, Testerman was back with a front page article focusing on the family of a Ku Klux Klan sympathizer who was murdered and whose parents agreed to donate his organs to those in need. There was one condition: The recipients had to be white. LifeLink agreed to the condition, reasoning that otherwise the life-saving organs would go to waste.

Despite its track record as a sophisticated observer of the organ transplant scene, however, even the St. Petersburg Times can't afford to ignore those touching community-based stories of children facing seemingly insurmountable medical problems--and parents facing seemingly insurmountable bills. Fundraising events get at least a brief mention, even if it's just "another case of a man who needs a kidney and they're having a car wash at the Kmart," says Susan Taylor Martin, the paper's deputy managing editor. "So much of the burden falls on the family to beat the bushes. It has an unseemly aspect, but it's still interesting enough from a news viewpoint."

If a patient wants a longer story, it helps if the child is very young--and has some unusual problems. When two unrelated infants, both located in Pinellas County, were diagnosed recently with an extremely rare condition requiring a lung transplant, the February 3 headline in the Times read "Every Day They Wait and Pray." (A few weeks later, after infant number one had received her transplant: "Baby with new lungs still doing fine.")

Covering such stories begins to take a toll, and some reporters say after years of writing them they resort to informal rules on whose calls get returned. Anna Barron Billingsley, a health reporter at the Richmond Times-Dispatch, uses three criteria: She wants a clear indication that the patient has no insurance coverage (given the number of patients with no coverage, she says, partial coverage doesn't qualify as news); confirmation of an established bank fund set up to accept contributions specifically to pay for an organ recipient's care; and some indication from a doctor or hospital that the transplant has been recommended.

Billingsley says she gets two or three calls a week about people who need bone marrow or organ transplants, and the 250,000-circulation daily can only feature one or two patients a year.

"I've just been on the phone this morning with someone who called about a 14-year-old leukemia patient who needs a bone marrow transplant," she said in a recent interview, sounding a bit battle-weary. Not much chance of a feature story or photo for this one, she predicted, though she expected the paper to publish a two- or three-paragraph item about a community meeting scheduled to discuss ways to help the patient. "Everyone thinks they're unique and need full-fledged coverage," says Billingsley, "but unless it's extremely unusual, we will not write a feature."

Generally, the smaller the community, the greater the pressure on the local media. "Our policy is to try to accommodate everyone," says Brian Ojanpa, staff writer for the Free Press in Mankato, Minnesota, which has a circulation of about 27,000. "We'll run a short item routinely [on fundraisers]; bigger stories have to jump through the usual hoops.

"That sounds like a nice, pat policy," he adds. "But what if two weeks later someone else calls, and you say we've already [done that story]? It's defensible journalistically, but how do you explain that to a family whose child is dying?"

He still remembers the time the paper carried a splashy feature--complete with photograph--about a young boy who needed a kidney transplant, and coverage snowballed into a community fundraising drive. "Then, several weeks later, a family with a similar story called and we just did a brief," says Ojanpa. "They got kinda teed off. What do you tell them? 'Sorry?' I don't know. Here we are in effect playing God."

Anemona Hartocollis, the Newsday feature writer who helped make Simon Fischler famous, concedes that needy-organ-recipient coverage isn't fair, but says life isn't fair either. "I didn't really care how fair it was at that point," she says of Simon. "I only cared that he needed a transplant, and that moved me." She adds, "It's not a pure process. I do stories on what appeals to me personally. I'm not sure that's wrong."

Asked whether there might be guidelines aimed at avoiding the cute-child syndrome, she responds, "How would you set them up? Do you have to be about to die, or under 10 years old?.. Some [stories] are more compelling than others; these are the judgments one makes. I don't know how else you do it... The truth is you can't do everybody. You could argue one week do a Jew, the next a black, the next a Greek--it's still a value judgment... Doctors make a similar judgment. Not everyone is equal; nor should they be."

Some papers try to ignore the influx of requests for help, which is growing rapidly thanks to advances in medical science and the swelling ranks of potential organ recipients. The New York Times, for example, never mentioned Simon Fischler. A science writer there says the Times only does stories that touch on ethical or scientific questions. The Washington Post doesn't carry regular items about organ or bone marrow recipients. (However, it did publish a heart-warming story earlier this year about a Russian child who was trying to raise money for her expensive leukemia treatment at a Washington hospital. The child later died.) But for most papers, especially ones under pressure to keep up with all that wrenching human interest footage on local TV, people who need transplants are harder to ignore. "There are no real good guidelines," says Kristi Krueger, the Miami television reporter. "I wish there were."