Hundreds of thousands of schoolchildren who were given a nasal radium treatment pioneered at John Hopkins may have an increased risk of cancer, but a federal advisory board concluded yesterday that notifying them would be of little benefit.
The treatment, nasopharyngeal irradiation, was considered standard medical care in the 1940s and 1950s for middle ear obstructions, infections and deafness. According to a recent estimate by the Centers for Disease Control and Prevention, at least 500,000 schoolchildren may have received the procedure as late as the 1960s.
Although the nasal treatment was not experimental, it was studied by the Advisory Committee on Human Radiation Experiments as part of its inquiry into more than 4,000 human radiation experiments starting in 1944.
In a massive report presented to President Clinton yesterday, the committee declared that many of those government-sponsored experiments were performed without consent and that doctors took advantage of their patients' trust.
Mr. Clinton immediately apologized to the survivors and families and ordered his Cabinet to devise a system of financial compensation for certain victims.
The panel's recommendation on the nasal treatment drew mixed reactions. Hopkins physicians who have studied it took issue with the finding of increased cancer risk. Dr. Donald Proctor, a professor emeritus of otolaryngology, said yesterday there is no evidence that it caused harm.
"You would think that if there were any real danger there would have been hundreds, or perhaps thousands of people documented as getting into trouble," Dr. Proctor said, "and there haven't been any."
Studies at the time showed that the procedure was effective for curing chronic ear, nose and throat conditions.
But some people who received nasal irradiation say the panel was wrong to recommend against notification.
"I'm angry," said Fran Kenneally, who got the treatments in Baltimore when she was 14. She blames them for her six miscarriages, a pituitary tumor and other health problems.
The method involved inserting a radium-tipped rod in the nostril for short periods. Patients say it felt uncomfortable. Some say they tried to block out the memory.
Elsin Ann Terry remembers it well. In 1955, at 14, she appeared on a Baltimore medical television show as a success story. But by age 20, she had lost all her teeth. She also suffers from Graves' disease, a thyroid condition.
Her identical twin, who didn't have the treatment, has a full set of teeth and no Graves' disease, even though the pair of sisters have both suffered from gall bladder and other health problems at the same time.
A key issue for the panel -- chaired by a Hopkins bioethicist, Dr. Ruth Faden -- was whether anyone should be notified for medical follow-up.
According to the report, nasopharyngeal irradiation did put the patients at risk -- much more so than two other examples, such as children exposed to iodine 131 or prisoners subjected to testicular irradiation. The panel estimated the risk of cancers to the brain, head and neck to those who had the nasopharyngeal treatment at 4.35 in 1,000 -- 62 percent more than normal.
But because there is no accepted screening procedure for those cancers, the committee recommended against notifying people exposed as children. A group of adult military personnel who also underwent the treatment received significantly lower radiation, the committee said, and don't need to be notified.
Stewart A. Farber, a consulting scientist who works in radiation risk assessment and has closely followed the issue, called that decision outrageous, noting a small 1982 Hopkins study that found four patients who had the radium treatment died of head and neck tumors.
"Because this thing was never properly addressed back when, people are too embarrassed now to pay attention to it. It basically makes it clear that they weren't doing their jobs," said Mr. Farber of Pawtucket, R.I., who is setting up his own nonprofit clearinghouse to register people and disseminate information.
Dr. Lorraine Marin, a radiation oncologist and board member of the North American Brain Tumor Coalition, said people who know they had the treatment should tell their physicians so a closer examination of the head and neck area can be done during checkups.
But she added it was difficult to judge the risk with so little data.
The Johns Hopkins School of Hygiene and Public Health is studying about 900 people who received the treatment through a clinic Hopkins set up in Hagerstown. Dr. George Comstock, an epidemiology professor leading the study, expects results next year.
Meanwhile, 69-year-old Charles Rector is concerned. The Naval Academy physics professor said his glands are swollen and he's taking antibiotics.
Dr. Rector is thinking back to the treatment he received for ear trouble when he was attending Hopkins graduate school.