Old cure, new ills
Millions received nasal radium therapy in
1940s, '50s and '60s; Higher cancer risk studied; VA seeks to
warn vets, but more civilians underwent treatments
By Diana Sugg SUN
STAFF 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? Fears, regrets 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." Radiation
commonplace 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. Experts divided 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
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