It was another Hopkins breakthrough, another radical new medical treatment by Baltimore's most esteemed doctors-a cure for stuffy noses, sore throats, and chronic ear infections in kids. It entailed inserting radium-tipped rods through the nose, burning off swollen adenoids. Despite widespread controversy at the time over the use of radiation for such mundane conditions, it took off wildly.
In the 1940s, ads in the Bulletin of Johns Hopkins Hospital hailed the treatment as a "highly gratifying" remedy for deafness and regularly tallied how many hundreds of doctors across the country were buying up radium rods. In the '50s, an episode of WMAR-TV's (Channel 2) weekly medical show featured a doctor demonstrating the procedure on a little girl. The venerable Saturday Evening Post ran a flowery string of tales of childhood woe blossoming into higher grades, improved self-esteem, and even better looks after receiving this "amazing" treatment. It was the pediatric wonder drug of the post-World War II era, and from the late 1940s to the mid-60s, when the treatment was declared dangerous and slowly displaced by antibiotics, an estimated 500,000 to 2.5 million kids across America received it.
Decades since nasopharyngeal radium irradiation was last used as medical treatment, the hype surrounding it is back, only this time over its subsequent health risks, scientific protocol, and ethics.
Hundreds of people who had the treatment as children are now stepping forward to report a wide array of bizarre ailments-from entire sets of teeth falling out to impotency, pituitary-gland and thyroid tumors, and cancer of the tongue and cheek. Two studies on the effects of nasal radium to date have shown a significantly higher risk for various diseases in people who were treated as kids, but few of those treated have been formally notified of that risk. Those who have been are pushing for blanket notification of all those who were treated. Meanwhile, the institutions that designed, funded, and performed the treatment have all but declared the issue moot, asserting that a lack of records and data makes meaningful research into the effects of the radium treatment impossible. Without conclusive research, they warn, a notification campaign could create unwarranted panic.
But the tale of nasal-radium treatment is more than a mere case of what happened and who should do what. At the center of it all is Baltimore's most famous medical institution, Johns Hopkins. Hopkins was involved in the procedure from the very beginning, and has been less than forthcoming with information about the treatment since its use ended. More recently, as the issue has garnered growing national attention-a 1995 federal report on human-radiation experiments led to a public apology by President Bill Clinton-the revered research institution has downplayed the risk of the treatment and dismissed the need to address it.
Hopkins may want this problem to quietly go away, but it doesn't look like it will anytime soon. One advocate for the recipients of nasal-radium treatment, Stewart Farber, has been hammering away at the issue for 15 years, landing dozens of damning headlines ("Good Medicine or Bad" in the Tampa Tribune-Times, "A Time Bomb Up the Nose" in the medical journal Lancet) and putting his family more than $100,000 into debt in the process, and he's not about to give up. Congress has held hearings on the subject in recent years, and now a Maryland state senator who received nasal-radiation treatments as a kid is hinting at hitching his wagon to the notification cause. A Washington, D.C., law firm that has been involved in litigating several past medical-experimentation cases-including cases involving prisoners' testicles being irradiated in Washington state and Oregon and orphans at the Fernald School in Boston being fed plutonium-laced milk-is looking into the possibility of suing on behalf of the nasal-radium recipients. Each week, more and more people who received the treatment are stepping forward with odd health problems and lots of questions.
During his 50 years as a doctor at Hopkins, Samuel Crowe studied everything from the parasites of Baltimore dogs to tumors of the larynx in kids. But what made him famous in the laboratories on Wolfe Street was his use of radium in the treatment of middle-ear infections.
Crowe came to Baltimore in 1904 to attend Johns Hopkins Medical School, becoming a student and friend of Dr. William Halsted, the university's famed first surgeon. Crowe was trained to be a brain surgeon, but when in 1912 Halsted asked him to direct a new division of otolaryngology-the study and treatment of ear, nose, and throat diseases-Crowe obliged.
The development of the Otological Research Laboratory at Hopkins, which was funded by the Rockefeller General Education Board and the Du Pont family, coincided-and overlapped-with the school's early research into the medical uses of radium. Radium and its biological effects had only been discovered in 1898, and when in 1911 a handful of Hopkins doctors set out to obtain enough radium to set up a clinical program to study the highly radioactive metallic substance, they earned their reputation as pioneers in the field. In 1912, Hopkins physician Curtis Burnham traveled to Vienna to procure 200 milligrams of radium, the school's first significant supply. He carried it in a thin lead wrapping in his pocket for a few hours; he developed nausea within 24 hours and got a skin burn that took two weeks to heal.
Crowe, meanwhile, was studying deafness, which he quickly determined was largely caused during childhood and could be prevented. Buildup of lymphoid tissue around the opening of the Eustachian tube in certain children led to infection, causing varying degrees of deafness. If the swollen tissue was removed, he concluded, those infections and hearing problems could be eliminated.
By the early 1920s, Crowe determined that irradiation could make the swollen lymphoid tissue, also known as adenoid tissue, disappear. It could even be used to alleviate inflamed tonsils. And because irradiation vaporizes the nodule centers from which the tissue grows, it was more effective than surgery at preventing the corrupt tissue from growing back. "I can now say it is an established fact that results following irradiation of the nasopharynx alone in selected cases are as good and often better than those following operative removal of tonsils and adenoids," Crowe told The Evening Sun in October 1927. Crowe took his idea to Burnham, and in the 1930s the two devised an applicator that could be inserted through the nostrils and place radon on the spot requiring irradiation. (Radon is a byproduct of radium.)
Crowe continued to refine the use of radon over the years, but it wasn't until World War II that his research took a key turn. Approximately one-third of all U.S. Army Air Force aviators were grounded at any given time due to "aerotitis," a war-born word for temporary deafness caused by sudden changes in pressure during flight; ditto with submariners and divers while under water. Because the problem resembled the middle-ear blockage Crowe was encountering among Baltimore children, he approached the Army and the Navy about using irradiation on military personnel. Facing a severe drain in combat readiness due to the ear condition, the military contracted Hopkins to set up nasopharyngeal-radium-irradiation programs at bases and hired former Crowe student Dr. Henry Haines to train military doctors in the treatment's administration.
But there was a hitch. Because radon had a half-life of four days, doctors worried that by the time they reached military bases across the country the applicators would be spent. So Dr. Donald Proctor, a Hopkins colleague of Crowe's, approached the Radium Chemical Co. in New York about manufacturing applicators that used not radon but radium, which has a half-life of 1,620 years. Experimentation yielded a thin, wandlike applicator containing 50 milligrams of radium-about $1,200 worth-in a tiny metal cylinder at its tip. The applicators were tested on 7,613 military personnel and subsequently used to treat tens of thousands of servicemen over the next 20 or so years, until the Air Force began using pressurized planes.
After the war, Crowe took his radium findings and secured federal funding to apply them in an experiment on ear infections in kids. In a "Notice of Research" he submitted to the National Institutes of Health, then a division of the U.S. Public Health Service, Crowe wrote that the experiment was designed to "show the feasibility of irradiation of the nasopharynx as a method of controlling hearing impairment in large groups of children associated with lymphoid hyperplasia in the nasopharynx" and "to draw conclusions concerning the per capita cost of such an undertaking as a public-health measure."
The experiment was known as research project B-19. Nearly 5,500 students from 56 Baltimore City public schools were screened for hearing problems during the 1948-49 school year. Subsequent rounds of screening resulted in the selection of 582 children for the study group, which was divided into two groups (with members chosen at random), one to receive nasopharyngeal irradiation and one to serve as controls. The 291 children in the treated group were irradiated for 12 minutes in each nostril, 50 milligrams per dose, on at least three separate occasions. The other 291 were treated the same way, only with dummy applicators.
John Micklos, 61, remembers the experiment well. He remembers the day in 1948 when the school nurse came into his classroom at School 230 (now Canton Middle School) and called his name. He remembers the conversation around the dinner table at home as to whether or not he should receive the treatment. His Uncle Mike, who had been successfully treated for a serious illness at Hopkins, swore by the institution. To Micklos' mother, the experiment was a chance for free help with her son's adenoid problems. And so up Baltimore Street from Highlandtown on the number 20 bus John Micklos and his mom would go, then transfer to the number 13 bus that took them right up Wolfe Street.
They'd go into the old brick building facing Monument Street. The boy would get his yellow card stamped by the cashier, and they'd go up to the third or fourth floor to the ear, nose, and throat clinic and wait until the nurse called John's name.
"She'd say, 'How you doin', sweetie? How's the good little Greek boy?' And that burned me up," Micklos recalls. "They'd lay me on a gurney, one of six, seven, or 10 lined up in a row, and there were immaculate white sheets with the letters 'JHH' on them. They took this as a daily thing, you know, but [none of the kids] knew anything about an experiment. They'd take long rods you'd think would go up into your head but which went down through your throat.. In the container they looked like part of an old coffee pot, a percolator coffee pot. The container had a sticker on it that read ATOMIC ENERGY COMMISSION USA, OAK RIDGE, TENNESSEE. I remember it as if it was yesterday. There was a metal timer you could hear going click, click, click. Then you'd see the nurses pull out all the rods, clean them, and put them back in the container. Then my mother and I'd stop across the street and she'd buy me ice cream or something and we'd get back on the bus."
By the postwar years, people were using irradiation like crazy. Doctors used X-rays to burn away layers of facial skin to treat acne. Shoe stores used them to size people for shoes. There were concerns about such uses; in the late 1940s and early '50s a number of doctors published papers warning of radiation's potential long-term dangers, chiefly in the possible increased risk of cancers in head tissues.
"That radiation of any sort should become a routine is unwise; certainly if this does occur, the results should be checked and rechecked at intervals in order to anticipate an untoward effect," Drs. Laurence Robbins and Milford Schulz of Massachusetts General Hospital stated in a paper they read at the Jan. 7, 1949 meeting of the American Laryngological, Rhinological, and Otological Society in Boston. "Lack of an immediate reaction should not lull to rest the fears for possible latent reaction. Decision to treat a benign condition with so potent an agent as X-ray, radium, or any other radioactive material should be made only after careful consideration of each given case and after weighing the known beneficial results against the unknown dangers which may not appear for as long a time as 10, 20, or more years."
Dr. Kenneth Day, a Pittsburgh physician, worried about the commercialization of nasal radium. In "The Abuse of Nasopharyngeal Irradiation,"a paper he presented at the annual meeting of the American Academy of Opthalmology and Otolaryngology in Chicago in 1949, he blamed the rise of nasal-radium treatment on the "aura of mysticism" generated by wartime publicity and the profit potential for doctors. "There is no question that it has become big business," he wrote. More than $2 million had been invested in radium applicators to date, and because they could be rented for one or two days a month and "used successively on an officeful of patients," Day wrote, "they can become a lucrative source of income to the user."
"Their use is now advocated not only for conductive types of deafness with hyperplastic lymphoid tissue in the nasopharynx but for such alien conditions and symptoms as head colds, tinnitus [ringing in the ears], and chronic cough," he wrote. "The use of radium applicators has definitely reached the racket level, and they are being handled not only by otologists and radiologists but also by pediatricians and general practitioners. It has apparently become the custom to use them for the treatment of symptoms rather than pathologic conditions and, too frequently, the nasopharynx is not even examined before irradiation. . . . We are rapidly reaching the point where the cure is worse than the disease, and the beneficial effects of irradiation will be overshadowed by the deleterious and destructive results of its injudicious usage."
Despite the debate over its medical use, nasopharyngeal irradiation became a routine treatment for ear infections in kids, by hospitals and private practitioners alike. In a 1960 textbook on childhood tonsil and adenoid diseases authored by Hopkins' Proctor, it was described as the treatment of choice for children with hearing problems and ear infections.
The standard 50 mg. monel metal radium applicator is passed into the nasopharynx after cocaine anesthesia and left in place for twelve minutes on each side. The treatment is given three times with intervals of two weeks between applications. Beneficial results may be expected within six to twelve weeks. It is probably unwise to submit the child to more than two series of such treatments.
These treatments have now been given for more than a quarter of a century and to hundreds of thousands of patients and no instance of damage from irradiation has yet been reported. Nevertheless, both because two series of well planned treatments should suffice, and to eliminate any possible danger from excess irradiation, the limit should be set at two.
-Dr. Donald Proctor, The Tonsils and Adenoids in Childhood, 1960
Easton psychologist Virginia Blatchley, 58, received nasal radium in the late 1940s as a private outpatient at Hopkins Hospital. As an 8-year-old child she'd had adenoid problems that caused breathing difficulties and frequent colds, and she received the treatment on the advice of her guardian's doctor.
Ed Waclawski, 52, recalls receiving the treatment in 1950 or 1951 when he was 4 or 5. He had constant, nagging ear infections, and his mother took him to a private clinic on Eastern Avenue in Highlandtown. His cousin David McCubbin got the treatment in 1954, after a blow to the ear with a baseball bat ruptured his eardrum, subsequently causing constant ear infections.
"I remember going several times and I remember not wanting to go," McCubbin says. "But the only thing I really recall was them running these rods up my nose."
The U.S. Centers for Disease Control and Prevention (CDCP) estimates that at least 500,000 children-and possibly as many as 2.5 million-received the treatment between the late 1940s and the early 1960s.
By the time Proctor's book was published, however, use of nasal-radium treatment had begun to taper off, because of the rise of new antibiotics and the surgically inserted typanostomy tubes that are commonly used to treat otitis today, as well as growing knowledge of radiation's carcinogenic effects. According to the CDCP, use of nasal-radium applicators peaked in the early 1950s, with an estimated 69,000 to 345,000 patients receiving the treatment annually in 1952 and 1953, and then rapidly declined, with just 15,333 to 46,000 people receiving the treatment each year from 1958 to 1961. (The ranges represent low and high estimates.)
While most published reports concur that the treatment stopped soon thereafter, anecdotal evidence suggests it was more widely administered than even most doctors think. Victor DiPietro received nasal-radium treatment for "a few ear infections, nothing really rampant" in 1964 when he was 5 years old, his mother, Ellie, says. And Terry Waclawski, Ed Waclawski's 29-year-old son, received four nasal-radium treatments for chronic ear infections in 1974.
None of them gave the childhood treatment another thought for 20, 30, 40 years.
In 1977, Johns Hopkins Hospital sent out an advisory to the medical profession and the general public, urging nasal-radium recipients to get checked out by an ear, nose, and throat specialist and, if there were signs of a thyroid problem, a thyroid specialist.
As part of her doctoral thesis the following year, Hopkins Ph.D. candidate Dale Sandler conducted a study on nasal-radium treatment with epidemiologist Dr. Genevieve Matanoski. Because "few long-term studies of the safety and effectiveness of this treatment have been conducted," Sandler wrote at the time, the study set out "to determine whether a population of children with hearing loss who were irradiated with radium applicators in the '40s and '50s would have an increased risk of tumors in the area of the nasopharynx, thyroid, and other surrounding tissues, or would have other long-term results of radium treatments such as signs of hormonal changes related to radiation exposure of the pituitary glands."
For her study group, Sandler targeted 2,925 adults treated at a Hopkins-run deafness-prevention clinic in Hagerstown between 1943 and 1960. (These were not the children who participated in the B-19 experiment in 1948 in Baltimore.) The group was traced through two Washington County censuses, the telephone book, obituaries and death certificates, the city directory, information from relatives, and the Department of Motor Vehicles of Maryland and surrounding states-which together turned up 90 percent of the nearly 3,000 targeted patients. Further information on the subjects was obtained from mailed questionnaires, the cancer registry covering the Hagerstown area, hospital records, and again, obituaries and death certificates. Eighty-four percent of the questionnaires were returned, and all queries combined turned up 904 people who received nasal-radium treatment, 667 of whom returned their questionnaires. Sandler compared the information of the exposed and nonexposed groups.
The study results showed that there "appear[ed] to be an excess risk of mortality from brain cancer in the exposed group which is significant with a p value of .01" (meaning there's one chance in 100 that that number of brain cancers could occur by chance), and that "several other risks appear to occur in excess in the exposed group."
Specifically, there were three incidences of fatal brain cancer among the exposed and one incident of cancer of the soft palate, also fatal. There was also a high incidence of hearing loss among the exposed, with twice as many exposed patients requiring ear surgery and nine times as many suffering from thyrotoxicosis, or Graves disease, a condition characterized by an enlarged thyroid, rapid pulse, and an increased basal metabolism due to excessive thyroid secretion. According to Sandler's research, which was first presented at a 1980 U.S. Department of Health and Human Services symposium, the study "suggests a significant excess risk of head and neck cancers, especially brain tumors. The increased incidence of thyrotoxicosis in the exposed population may have resulted from hormonal imbalance secondary to pituitary gland irradiation and should receive further study." The results of Sandler's study were published again in the Journal of the National Cancer Institute in 1982. In addition to reiterating the above findings, this article stated that "a thyroid-cancer risk might be demonstrated with longer follow-up."
Soon after Sandler's study was published, a Dutch study of lower radium exposures found no excess of cancer mortality at any site associated with radium exposure. A follow-up study by the same scientist in 1996, however, showed a statistically significant doubling of overall cancer incidence, with most of the excess due to head and neck cancers. These two studies are the only two significant nasal-radium studies to date; Hopkins is currently conducting a second follow-up of its Hagerstown population, but it could be up to two years before the results go through peer review and get published.
Right about the time Sandler's study was making the rounds of the medical community, Stewart Farber stumbled onto the scene. A Pawtucket, R.I.-based public-health scientist who since the mid-1970s has spent most of his career performing radiation-risk assessments for nuclear facilities, Farber became an advocate for nasal-radium recipients by chance. It was a chat 15 years ago with a friend that launched his crusade to hold the U.S. military, the federal government, and the medical and academic communities accountable for what he calls "by far the most consequential" human-radiation experiment ever.
Farber was a staff consultant at the Yankee Power Co. in Bolton, Mass., in the early 1980s when, over lunch one day, his buddy Michael Krabach told him that in 1966 on the recommendation of his employer, a Dr. Henry Haines had put radioactive rods up Krabach's nose to help him handle water-pressure changes while scuba-diving for recreation. Farber was floored. Krabach told him that Haines had said the practice had been performed safely on thousands of people. That was the impetus for what became a 15-year research project.
Farber strung together the events of the previous 50 years and determined that this was a treatment that was largely mishandled-there was not enough follow-up study and tracking of patients who received the radium, and only nominal notification of risk. Farber's findings initially received little notice.. But he quietly plugged on, overturning stones, determined to one day get answers to his questions, which he contends raise grave ethical concerns.
It was the investigative reporting of The Albuquerque Tribune that handed Farber his break. A November 1993 series on 1940s experiments in which civilian hospital patients were injected with plutonium blew the lid off a slew of government-sponsored human- radiation experiments during the postwar era. The series riled government officials and the general public, earned the paper a Pulitzer Prize, and gave Farber entry into the nation's social conscience.
In response to the Tribune series, on Jan. 15, 1994 President Clinton appointed a 14-member panel, the Advisory Committee on Human Radiation Experiments (ACHRE), to investigate the Cold War treatment that took place in the name of national security. Chaired by Dr. Ruth Faden, director of the Bioethics Institute at Johns Hopkins University, the committee also included one member of the general public, a consultant, another Hopkins professor, and 10 other university staff members specializing in everything from radiation oncology and nuclear medicine to epidemiology and law. ACHRE's mission, as stated by the president, was to look into human-radiation experiments spanning the administrations of Franklin Roosevelt to Gerald Ford (1944 to 1974), identify ethical and scientific standards for evaluating those events, and make recommendations to ensure that the wrongdoing of the past not be repeated in the future.
The committee began in April 1994 by educating itself with presentations on such basic topics as research ethics, radiation, the history of human experimentation, the law of remedies, and the debate over the effects of low levels of radiation. It then hired a staff and set about interviewing people-from members of the public to researchers, attorneys, investigative reporters, authors, and representatives of concerned interest groups-via dozens of public meetings around the country, telephone, mail, and personal visits. ACHRE ultimately studied 4,000 human-radiation experiments. According to ACHRE member Dr. Eli Glatstein, nasal-radium irradiation was included only because of Stewart Farber's relentless prodding.
"The committee didn't spend much time looking at that problem at all; other problems were considered more important," says Glatstein, director of the outpatient clinic in the Department of Radiology Oncology at the University of Pennsylvania in Philadelphia. The panel, he says, was up against tight deadlines, and as a result, some issues got tabled. "We were interested in the groups that had higher risks. If the committee had been in existence longer I think it would have taken this one up with more interest."
Farber fired off irate letters to ACHRE and got members of Congress to write the committee imploring it to look at nasal-radium irradiation; he particularly piqued the interest of Sen. Joseph Lieberman (D-Conn.), who chaired an August 1994 hearing on the issue before the Senate Subcommittee on Clean Air and Nuclear Regulation. "To me, the best evidence of the danger of this radium treatment is the fact that no doctor in his right mind would think of performing such a procedure today," Lieberman said in his opening statement. The senator's role in demanding answers about nasal-radium treatment and notification for its recipients raised the profile of the issue. No longer was this merely the soapbox of a lone scientist in little Rhode Island.
A year and a half and $22 million later, ACHRE submitted its final report to the president, a 900-page tome that included about six pages on nasopharyngeal irradiation.
Based on its own limited risk analysis, ACHRE reported that those who underwent nasal-radium treatment faced a 62 percent higher risk of mortality from brain cancer. (Farber, based on a Hopkins study, puts the risk factor at closer to 100 percent.) That by far exceeds the risk faced by Japanese atomic-bomb survivors for all types of cancer, the report notes. But it also identified a twist that, in the committee's view, set this treatment-and the experiments that took place during its development-apart from the others the panel reviewed.
"Fairly early on in trying to get a handle on this huge enterprise we decided to focus on research that was nontherapeutic, research in which even at the time there was never any expectation that the people serving as subjects could benefit from anything," Faden says. "And because we were primarily concerned with questions of ethics, at the time these were the most ethically suspect studies." Nasal-radium treatment didn't fall into this category because it was deemed "therapeutic." According to ACHRE's report:
The application of radium was at this point a common, but scientifically unproven, treatment for children at risk of hearing loss; the risks of treatment were not well characterized. If it was really unknown which was better for children-receiving radium or no intervention-then the medical interests of the children were best served by being subjects in the research because, as a consequence, they would have a 50 percent chance of receiving the better approach. The nasopharyngeal experiment thus belongs to a class of research the Committee did not investigate-therapeutic research with children.
Faden also notes that the committee looked only at cancer, "the most prominent and most recognizable and most serious consequence of radiation exposure." ACHRE was responding specifically to the president's charge "to identify the principles under which it would be appropriate and necessary to notify people to protect their health." Because there are no indicators for head and neck cancer as there are for, say, prostate and breast cancer, the committee did not determine that notification would serve nasal-radium recipients in a constructive, preventive way.
Thus, ACHRE included nasal radium in a category of experiments for which it believed no notification or follow-up study was necessary. The president, in his own policy report published this past March, stated that the administration would "propose legislation to make veterans treated with nasopharyngeal radiation eligible for health screening" through the Department of Veterans Affairs, but did not address any such measures for the Baltimore kids upon whom the treatment was tested. Interestingly, in an interview for this article Faden said that if anyone were to be notified, in treatment terms it would make more sense to notify those who underwent the procedure as children because they are younger, and thus better candidates for medical intervention.
In recent years, as nasal-radium treatment has garnered greater attention in the press, Johns Hopkins has responded much as ACHRE did on the question of notification.
A letter Hopkins sent to people who had received the treatment as children and had inquired with the hospital about it compared nasopharyngeal irradiation with external-beam irradiation, such as what patients get in an X-ray. The letter states, "No increased risk of disease has been described in patients who received radium treatments." Another letter, which Matanoski and two associates sent to some participants in the Sandler study in 1996, states that the Sandler study "showed almost identical illness rates among the group treated with radium and the group who had other treatments." In both cases the statements conflict with the published results of the Sandler study.
And in a pamphlet issued in November 1994 to address the growing queries into nasal-radium treatment-entitled "Nasopharangeal [sic] Irradiation"-Hopkins takes 12 pages to cover the history of the treatment without so much as a mention of the B-19 experiment.
In recent media accounts, Hopkins has been similarly taciturn and seemingly contradictory. In an Oct. 12 story in The Sun, Matanoski describes the risk associated with nasal radium as small, and says that without hundreds of names, scientists won't be able to do a large enough study to produce reliable results. The same article notes that Hopkins recently uncovered the names of 200 people who participated in the B-19 experiment, but the story offered no comment from Matanoski on the significance of those names, and what, if anything, Hopkins might do with them. In a statement to WJZ-TV (Channel 13) regarding the 200 names, Dr. Mark Richardson, professor and vice director of Hopkins' Department of Otolaryngology, said, "Because there are no consistently demonstrated health risks to the group from their exposure, we do not think notification is the best course of action at this time. If this should change, we can certainly reconsider notification in the future."
Matanoski did not respond to calls for comment for this article. In response to faxed inquiries, Hopkins sent City Paper a copy of the statement Richardson gave to WJZ; the institution also clarified that the 200 figure is an estimate based on personal files of doctors who administered the treatment and a registry the otolaryngology department is keeping of individuals who call and request information.
The position of the federal government and Hopkins has left those who were irradiated as kids baffled. In all likelihood, a similar situation would have most private corporations scrambling to avert a public-relations nightmare. But there are considerations that make notification tricky. ACHRE member Glatstein pushed for notification of nasal-radium participants but ultimately voted with the rest of the committee due largely to the potentially huge costs of notification and screenings.
"There is no foolproof test, and who's going to pay for it?" he asks. "There is work to be done and someone has to do it, but they have to be reimbursed for it. And I don't think it's the government's job to do all this." Glatstein also reckons the issue would be a tough sell to the Republican Congress. As for whether Hopkins should pay, he says, "There is no precedent for that.. I can't imagine why they should be picked on."
Bioethicists say an ethical case can be made both for and against notification. Bette-Jane Crigger, editor of the Hastings Center Report, an ethics journal, says the issue raises questions such as, "How does the public cost balance up against the possibility of individuals' benefit in being notified?" and "What kinds of responsibility do I have to monitor my own health?"
For Arthur Kaplan, director at the University of Pennsylvania's Center of Bioethics, the answer to the question is simple. "How do you keep people trusting in medicine and in their government if [those institutions] look indifferently at things done in the past?" he asks. But notification handled improperly, he says, can be as risky as non-notification. Do you issue an apology or an explanation? Do you do a public-information campaign or leave it to doctors to make notification a part of a patient's history? And how might people respond?
"You want to presume that people have a right to know. At the same time, a right to know doesn't mean being scared out of your wits," Kaplan says. "The issue is not do people have a right to know, but how you tell them. The host of horribles," he says, "is pretty long."
"Duties to let people know turn on several factors," ACHRE's Faden says, including the perceived level of concern and whether notification would provide people with information or merely spark fear. (While Faden is affiliated with Hopkins, she was not in any way connected to the institution's nasal-radium-treatment studies and thus was commenting generally on notification issues, not on the specific question of Hopkins' responsibility in this case.) "Can I prevent harm by notifying people, which should be defined both medically and emotionally?" she says. "Public-relations concerns also affect decisions. Would it be good for the institution to do this?"
The particulars of the notification argument aside, the one thing doctors and ethicists keep coming back to is the need for further study into nasal radium and more conclusive information regarding its risks. Hopkins contends there is not enough data to do a meaningful study (it hasn't stated how much it considers enough), but Farber and nasal-radium recipients argue that the 200 names Hopkins has is a start. In addition, Farber himself is compiling a registry that is currently 875 people strong-625 of them Marylanders he's added to the list since the Sun article and a September WJZ story ran.
Two years ago last March, Virginia Blatchley discovered a lesion under her tongue. She was diagnosed with cancer.
In 1987, when he was 27, Victor DiPietro felt a sore inside his cheek. He was diagnosed with cancer and had the tumor removed, but not before the cancer had spread to his eye. In 1991, DiPietro died.
Three years ago, Ed Waclawski became impotent. He also had terrible headaches-the result, two MRI tests found, of a tumor on his pituitary gland that was pushing against his brain. The benign tumor was surgically removed in November 1995, but Waclawski has suffered ever since from constant headaches and episodes of disorientation.
About the same time, Waclawski's cousin, David McCubbin, who had lost all his teeth in the mid-1980s, was also experiencing impotence and headaches, as well as bouts of dizziness that caused him to pass out. An MRI revealed a 15-to-20-year-old tumor between the pituitary gland and the brain that was invading the optical nerve. McCubbin had it removed, but he still has sharp pains every time he turns his head, and he remains impotent at 51.
As for Terry Waclawski, he's now 29 and has lost 30 percent of his hearing in both ears. He has sleep apnea, his nose constantly runs, and he wears cotton inside his ears when it's cold. He is also beginning to experience impotency.
"Everyone I know who had radium treatment got tumors. Now what? Have I got to wait 20 years for this shit?" he asks. "I'm scared now."
Like many of the hundreds who contacted Stewart Farber, the Waclawskis only learned of the risk associated with nasal-radium treatment when they heard about it recently in the news. As a result they're currently trying to obtain old doctors' records they think might provide information that could prevent Terry from going through what his father and uncle went through.
Maybe not everybody who underwent nasal-radium treatment decades ago would benefit from notification today. According to state Sen. David Craig (R-Harford), who had the treatment in the 1950s, besides the ethical question of notification, how much it will cost and who should pay will also be issues in the debate. But research and notification of what might be in store for folks such as Craig and Terry Waclawski might help them avert the cost-personal as well as financial-of dealing with as-yet-undiagnosed conditions.
Terry is young, notes his mother, Shelbie Waclawski. "He could still avoid the surgery" his father and uncle had to have. If he knows what awaits him.
If you underwent nasal-radium irradiation or want information on the Radium Experiment Assessment Project, contact Stewart Farber, (203) 367-0791.
Updated on November 4, 1997