The New York Times

The debate leading up to the House vote last week to expand patients’ rights was punctuated by a stream of health care horror stories.

Last Wednesday, for example, Representative Sheila Jackson-Lee, Democrat of Texas, rose to tell the story of “little Steve Olsen,” a boy whose brain damage was misdiagnosed at a San Diego Hospital.

Jen A. Marchesini, a spokeswoman for Children’s Hospital, confirmed that Steve had been cared for there but could not comment on the case because of the need to protect patient confidentiality.

Therein lies a difficult twist in the health care debate.

Harrowing stories like Steve’s have been collected and aggressively distributed by several interest groups that supported the legislation to expand patients’ rights. They know they have few more powerful weapons than hair-raising examples of people who were denied care or given botched treatments under managed care.

But are the stories all true? These complicated personal tragedies usually have two sides, and both are rarely adequately presented. The health plans and providers cannot discuss individual cases because of patient confidentiality laws. And although patients can waive such restrictions, they generally do not.

The groups distributing the stories are also unable to insure their veracity. “We tell the story in the patients’ own words, or from a parent,” conceded Jamie Court, director of Consumers for Quality Care, the group that found Steve’s story. “All we can do is report on what people tell us.”

The health insurance industry resents the anecdotal barrage. “These are allegations and should be treated as allegations unless proven as fact,” said Mark Merritt, vice president of the American Association of Health Plans, which represents more than 1,000 managed care groups.

But the industry and its allies expect to be confronted with a new batch of stories the next time Congress debates health care.

“The unfortunate reality is no health care system is going to be perfect,” Mr. Merritt said.

The distribution of these stories of hardships has become more sophisticated.

Families USA uses its Web site to solicit “compelling stories” of people who have had problems with their existing health insurance coverage.

A group called Physicians Who Care, a nonprofit organization based in San Antonio, Tex., offers on its Web site the Managed Care Atrocity of the Month and the Managed Care Hall of Shame. Links on the Web site offer a forum for personal stories and a template for e-mailing Congress.

Consumers for Quality Care also collects patients’ experiences on its Web site.

The effort to influence Congress through personal experience does not stop with consumer groups. In 1997, the American Medical Association ran advertisements for the physicians lobby: “You don’t have to wait to tell the grandkids your managed care war stories. The A.M.A. wants to hear them right now.”

Ms. Jackson-Lee’s speech was not the first recounting of Steve Olsen’s health problems.

Consumers for Quality Care, which is based in Santa Monica, Calif., and is affiliated with Ralph Nader’s Foundation for Taxpayer and Consumer Rights, began circulating Steve’s story four years ago.

Ms. Jackson-Lee said she heard the story from the Congressional children’s caucus. She also spoke to Steve’s family before giving her speech about his case. Ms. Jackson-Lee and Scott A. Olsen, the boy’s father, said Steve suffered brain damage in 1992 when, as a 2-year-old, he fell at a family picnic.

After receiving care at the emergency room at Children’s Hospital, Mr. Olsen said, Steve was sent home. A week later he became ill with flu-like symptoms and returned to the hospital. The diagnosis was meningitis and the family was told that it would run its course. Still weak and physically ill, Steve went home. Several days later, he was found unconscious in his bed.

After he returned to the hospital and was given a CAT scan, doctors found a swollen, infected area on the front of his brain, which was believed to have been caused by the fall. Examinations of the brain were delayed, the family said, despite their requests, because their health maintenance organization denied the test.

Today, Steve suffers from cerebral palsy; he is blind and “developmentally delayed,” Mr. Olsen said. The family continues to face denials from the H.M.O. for physical therapy and other medical needs, he said.

In 1994, a jury ruled that the California Board of Regents, which supervised the resident who cared for Steve, must pay the Olsens $7 million for his pain and suffering, but that was reduced to $250,000 because of a California law that limits malpractice awards. The family received a $2 million liability settlement from the medical group that provided care.