Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SUNDAY, April 29, 1990 TAG: 9004300222
SECTION: EDITORIAL PAGE: F-3 EDITION: METRO
SOURCE: CHARLES HITE
DATELINE: LENGTH: Long
A four-month-old boy with a rare bone disease desperately needs a bone-marrow transplant. His mother is single and out of work, and has no health insurance. The procedure could cost as much as $180,000.
Newspapers field calls for help every day. Sometimes they do a story, sometimes not. Sometimes the community responds generously to an individual or family's plight. Sometimes little money or help results from such stories.
Pleas from those who face catastrophic medical bills always gnaw at me. It's not that I'm unsympathetic. What bothers me is that I know there are many others whose stories will never get in the paper.
Maybe their bills have accumulated from chronic illnesses that aren't dramatic or high-tech. Maybe they aren't savvy enough to know how to tell their stories. Maybe their bills don't seem big enough to make much of a story.
In this case, I did do a story. In fact, I wrote more than a dozen stories in a relatively short period. I think my newspaper was justified in doing so. But very little money was raised for little Andy Moore. Should that change the way we handle future requests for help?
As medical writer for the Roanoke Times & World-News for seven years, I have dealt with other pleas for money. I was sure Andy Moore would not be the last.
When Andy's mother filed suit to force his father to be tested as a donor, the case got national attention. Andy's story was splashed in supermarket tabloids and featured in USA Today. His mother appeared on the Sally Jesse Raphael show. People magazine called, trying to track her down.
The flurry of stories from outside news organizations quickly died a week later when Andy's father - claiming the problem was simply poor communications - agreed to be tested as a bone-marrow donor.
But local interest in Andy Moore continued. As the search for a suitable donor dragged on, Andy's disease caused him to become blind. He had severe seizures and episodes when he stopped breathing and his heartbeat slowed to dangerous levels. Andy was transferred to a medical center where he underwent therapy with an experimental drug.
I wrote stories about these developments, as well as stories on how the national bone-marrow donor program worked. There was a lengthy takeout with several pictures.
Two months after the first story appeared, Andy Moore died. About $15,000 had been donated to a local Jaycees group for Andy, an amount far short of the minimum $30,000 deposit that one medical center wanted before it would do the transplant.
Less than two weeks after Andy's death, a caller asked me about the possibility of having the $15,000 donated to a friend who needed a bone-marrow transplant. The caller didn't know the money was being given to a foundation for research on bone disease.
I told the caller to do what Andy's mother had failed to do: Find a local television or radio station to promote the case as part of its community public-service programming.
I wasn't passing the buck. Rather, I had become convinced from an experience three years earlier that newspapers rarely would be able to provide the sustained publicity that could raise the money for costly, high-tech medical procedures.
Jimmy Snider was a blond, wide-eyed 17-month-old who looked like a tiny old man in the last stages of alcoholism. He needed a liver transplant. His unmarried parents, 17 and 18, had no jobs and no health insurance. Virginia's Medicaid program would not pay for the procedure.
Barbara Viars, 32, looked listless and weak. Her skin was a pale, yellowish green. She, too, needed a liver transplant but had no way to pay for it. She, too, would not qualify for a transplant under Medicaid.
I wrote two lengthy stories about Snider, Viars and others who needed transplants but had no money. Medicaid officials defended the state's policy as necessary to assure that basic health-care services could be provided to other needy citizens. I talked with officials in Oregon who were considering a priority list for Medicaid services.
These stories gave me a bad taste for a health-care system that forces people to try to raise money for medical treatment through the media. I saw that equally deserving patients are not always treated equally by the media.
Jimmy Snider's foster parents in Richmond were willing to do everything they could to see that Jimmy got his transplant. A TV station described his plight in public-service announcements. TV crews filmed him several times at home. One spot, showing Jimmy by the family Christmas tree, warned this might be his last Christmas.
Money poured in, but not without a price. Anita Carter, Jimmy's foster mother, said her family's life was turned topsy-turvy by the constant public attention to his case. It added even more to the stress of raising a child with a life-threatening disease, she said.
Fund-raisers for Barbara Viars weren't as successful. Despite efforts by several organizations in her community, only a few thousand dollars was raised. Fortunately, the medical center agreed to waive a $30,000 deposit when a donor liver was found.
Families shouldn't have to pass the hat in public to raise money for life-threatening medical procedures, Carter said. She said Jimmy's younger brother also was born with liver disease and could some day need a transplant.
"Are people going to be willing to give money for him?" Carter asked. "There are so many worthy causes out there. What if you are not cute and winsome and willing to smile for the public? What happens then?"
The media will get more requests to raise funds for medically indigent people as states look for ways to get budgets under control, says Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota.
The media have a responsiblity to write these stories, he says, but not simply on the basis of whether the patient is "media-genic." News organizations need to report on the "attractive and unattractive" cases that come to their attention, he says.
To protect themselves and to be fair, Caplan adds, news organizations should set up a policy outlining criteria to be used in deciding how much coverage to give a particular case. Newspapers and television stations already make similar policy decisions, he points out, on how much coverage to give to the United Way or other civic groups.
"It seems arbitrary and unfair to tell a family that you're not going to write about their case because you just did one last week," Caplan says.
The media also have an obligation to go beyond the heart-tugging stories, Caplan says.
"Where the media falls down is that they rarely get to the question of why people are in this particular plight," he says. "It's as if they were reporting on people drowning as they float down a river without asking why or how they got into the river."
News organizations need to tell why Medicaid won't pay for certain procedures or why Veterans Administration hospitals are cutting services or how insurance companies decide whether to pay for certain procedures, Caplan says. They need to do follow-up stories on whether money saved by not paying for high-tech procedures was shifted to other health programs.
"I don't see enough of those stories," Caplan says.
by CNB