Old cure, new ills
By Diana Sugg
Sifting through old files and stacks of boxes, staffers from the Department of Veterans Affairs are trying to track down thousands of submariners and pilots who received radiation treatment for ear troubles during World War II. The government wants to tell them they may be at increased risk of cancer.
But no one has stepped forward to do the same for civilians who got the treatment as children, even though their risk from the radiation is as much as 10 times higher -- and they may number as many as 2 million.
"If they are notifying the military people, I am still a part of the citizenry, just like they are. I pay taxes just like they do. They have an obligation to let us know, too," said Bass Bullock, 58, one of roughly 67,000 Marylanders who underwent nasal radium treatments as children. "All my life, I wondered about those treatments. I never got an answer."
The treatment, called nasopharyngeal irradiation, was pioneered by Johns Hopkins physicians. They threaded radium-tipped probes up through the nostrils to shrink swollen lymphoid tissue at the back of the nose. Doctors prescribed the therapy to treat hearing loss, tonsillitis, allergies and even colds. Its use faded by the mid-1960s, but the debate over its risk continues today.
The federal government decided this spring to begin trying to notify veterans, and the Department of Veterans Affairs recently proposed legislation that would qualify those treated for priority medical care. But unlike veterans who have a federal agency advocating for them, those civilians treated as children are adrift.
Officials at the U.S. Centers for Disease Control and Prevention and Johns Hopkins Hospital say people who were treated should tell their physicians. But without good records, the institutions say, they can't notify people, and without a large study showing some danger, officials say, it's not necessary anyway. Most records of a Hopkins experiment in nasal radium therapy on 582 Baltimorethird-graders in 1948 are lost. The public clinics where thousands of other Maryland schoolchildren were treated are closed. Physicians who administered nasal radium treatments in private offices are dead.
Now, those treated as children just want to know. Are they in danger?
At the time, they were elementary schoolchildren with stuffy noses and earaches. Their parents and principals told them they needed the treatment. But they carried doubts and worries for decades. In recent years, some have reported nasopharynx or tongue cancers, or conditions linked to the pituitary or thyroid gland. One Baltimore woman is haunted, wondering if a warning might have saved her son.
"I had confidence in the nasal radium treatment because I had confidence in the doctor, and I'm sure he was confident in it because it came from Hopkins," said Eleanore DiPietro, a registered nurse. The Catonsville woman's son, Victor, died at 31 in 1991 from a malignant tumor that started inside his cheek and spread to his eye and other organs. The oncologist told her the radiation was most likely to blame.
"If we had known about the risk," DiPietro said quietly, "we would have had regular scans or blood work, and maybe picked it up sooner."
State Sen. David Craig, a Harford County Republican who had the treatment as a 6-year-old, is now investigating the issue and said he may put together a task force.
"If we have more than 50,000 people of my age group that have had this done, we need to look into that as a potential cause of cancer now and not wait," said Craig, 48, a member of the health subcommittee of the Senate Economic and Environmental Affairs Committee. His sister also had the treatment. "With Maryland having one of the highest cancer rates, I think it's incumbent upon us to examine everything that may be a factor in that."
In the boom of radiation treatments in the 1940s, '50s and early '60s, nasal radiation rivaled any in its scope, reaching civilians and military personnel in at least 10 states and Europe. Considered a better alternative to invasive surgery, the treatment shrunk swollen lymphoid tissue and improved hearing, early research showed.
At the time, the use of radiation had been tapped to treat medical conditions ranging from acne and birthmarks to cancer and gastrointestinal problems. Babies with enlarged thymus glands underwent radiation treatment, because physicians believed they were more susceptible to frequent colds. Shoe stores even used an X-ray device to allow people to see whether their feet fit properly inside shoes.
For the military, nasal radiation was a solution to the chronic ear problems -- from colds and air-pressure changes -- that grounded pilots and beached submariners.
A `miracle cure'
For many families like the Shaffers in Pennsylvania, nasal radium treatments seemed a miracle. Regina Shaffer's daughter Luan had her tonsils and adenoids removed, but ear infections kept cropping up. She cried at all hours of the night and missed school. She couldn't hear well and began to mispronounce words.
The nasal radium treatment worked. "I just started to hear all of a sudden. My parents were like, `Whoa, this is great medicine,' and that's when they did my brothers, too," said Luan Bremerman, now 39. All are healthy.
But as early as 1948, there were hints of problems, with studies published about blood vessel lesions and thyroid cancer. Still, nasal radium treatment was enthusiastically embraced. Experts say it's a familiar pattern in society: New medical therapies are favored, and long-term risks are brushed off.
Eventually, modern solutions such as antibiotics and ear tubes took the place of nasal irradiation. By 1977, the National Institutes of Health published a brochure for physicians, warning that people who had this radiation were at "significant" risk of developing cancer, particularly in the thyroid gland. It stated that the patients should have a thyroid exam every one to two years. Hopkins sent a similar memo to physicians.
But today, scientists disagree about the risk.
Top medical experts, like those from the U.S. Centers for Disease Control and Prevention, say studies are inconclusive. Others, like Dr. Genevieve M. Matanoski, an epidemiologist at Hopkins, described the risk as small, while others point to accumulating evidence of danger.
The Advisory Committee on Human Radiation Experiments, a national panel that published a massive report in late 1995 on radiation experiments, estimated the risk of cancers to the brain, head and neck from nasal radiation treatments at 4.35 in 1,000 -- 62 percent more than normal, and more than for any of the 4,000 various radiation experiments.
The most recent study, done in the Netherlands, found a doubling of tumors among the exposed group, but no increase in cancer mortality. Hopkins expects to finish soon a study on people who had the radium treatment in the Hagerstown area.
VA officials took their position after reviewing the Advisory Committee's report and the advice of an expert panel that met at Yale University. According to CDC estimates, anywhere from 8,000 to 20,000 veterans got the nasal radium treatment.
But the VA's notification decision went against the Advisory Committee report. That panel said that even though there was a risk, it wasn't worth notifying people, because there isn't a good way to screen for head and neck cancers.
A difficult diagnosis
Dr. William Gray, an otolaryngologist who specializes in head and neck cancer at the University of Maryland Medical Center, agreed that these relatively rare cancers, which develop in inaccessible areas, would be difficult to diagnose early. Even if a person underwent expensive head scans annually, he said, the cancer could still start and spread between scans. Some of the symptoms of these cancers, such as post-nasal drip and a sore throat, add to the difficulty.
But Gray has treated several patients, including Victor DiPietro, whose cancers may have stemmed from their nasal radium treatments. "I would want to know," he said, "if I had something that potentially increased my risk for cancer."
Signs of trouble
Patients like Virginia Blatchley feel the same way.
The 58-year-old Easton woman had the radiation treatment as a child for recurrent respiratory infections. Several years ago, she noticed a lesion on her tongue, but dismissed it as an ulcer for about four months. Eventually, she was diagnosed with cancer of the tongue.
"If I had read of a risk, or been warned," said Blatchley, "I would have been more aware and not allowed that lesion to go on and on for as long as I did."
Another person who had the treatment, Donald Bock, has been diagnosed with a thyroid tumor.
"The doctor's first question was, `Did you have radiation treatments?' " Bock said. Now the 56-year-old Pasadena man wonders if the treatment also explains the tumors in his back and lung.
Call for action
Stewart Farber, a Rhode Island scientist who specializes in radiation risk, believes institutions such as Hopkins and the CDC should take a more active role and notify people of the risk through public service announcements or other means. A lone advocate, he has closely followed the issue for 17 years and recently created a registry of those who were treated. So far, he has tracked about 550 people, roughly half from Maryland. The Radium Experiment Assessment Project also aims to promote medical surveillance and encourage further research.
"We want to push these really irresponsible bureaucracies to act on this," said Farber. "It's easy to pretend this issue doesn't warrant attention or just totally ignore it. But the facts are real."
Still, officials at the country's main public health agency, the CDC, said without good records, it would be almost impossible to notify people. They've put together a video for physicians and recommend that physicians perform more thorough head and neck exams on people who were treated.
For Hopkins' part, its scientists have occasionally sent letters to those in the Hagerstown study, saying little risk has been found. Hopkins officials also said this week that they recently found the names of about 200 people who were in the original experiment in 1948. As for those who were treated as part of their routine care, the hospital's policy is to keep patient records forever, but files of those who got the radium therapy aren't in one particular place. They're mixed in with everyone else's files, sorted by patient number, in boxes, in filing cabinets, on microfiche.
Without hundreds of names, Matanoski, who has led Hopkins' studies on nasal radium treatments, said scientists won't be able to do a large enough study to produce reliable results. The answers to the questions that haunt so many may remain a mystery.
"All these little problems you have, you wonder, could that have been from those radiation treatments?" asked Barbara Skiba, 60, who had the treatments when she was about 12.
A year later, all her fingernails and toenails fell out, and sores stung her hands and feet. As an adult, the Baltimore woman had swollen lymph nodes removed from her nasopharynx. "I don't know what's growing in me. What will happen to me in the future?"
Originally Published on 10/12/97