“Hopkins is Waiting for us to Die:” The Human Cost of Censoring Science and Methods for a More Ethical Reality
(The following is a full-length chapter from my book project, “Radium and Roses,” for which I am seeking a literary agent. THIS STORY IS IMPORTANT! Please share widely.)
It’s 7:30 am on a weekday in February 2025. I am hugging my knees to my chest on the bathroom floor when I am supposed to be getting ready to teach three college classes later that morning.
I receive a notification that there was another post in the Nasal Radium Irradiation Survivors Group. Today, a member asks,
“Anyone else who had the treatments have kids with cancer? Think our eggs were radiated? I had 88 minutes of radium exposure and I can't help but wonder…”
Among the elderly adult survivors in the group there exists a shared sentiment:
“Johns Hopkins, the CDC, and the US Public Health Service are waiting for us all to die.”
On this particular February morning, I feel sick to my stomach. I realize I have been living in a state of fight or flight response for seven years now; yet, I type my reply:
“This is why it is SO IMPORTANT that research be done on the after effects of this treatment.
I am the grandchild of someone who received these treatments and I know enough about radiation to know that this level of exposure could have impacts that we don’t fully understand yet (especially when the research isn’t being done).
We know that radiation can change the human genome. We just don’t know how in this specific case because Hopkins and the CDC continue to uphold the narrative that there were no harmful after effects.
Sadly my hope for institutions that can be accountable for this level of harm is dwindling more than ever given the recent attacks on science that are happening in the U.S.”
Since 2018, I have read and made social media posts similar to those above—sometimes early in the morning, sometimes late at night. Regardless, my body's response is the same. My heart rate increases and sweat pools under my arms. My thoughts begin to spiral to a place where my grand sense of purpose walks hand-in-hand with my grand sense of hopelessness.
In 2018, doctors discovered a lemon-sized glioblastoma in the frontal lobe of my grandfather’s brain. It was when speaking with his radiologist and oncologist about lifetime limits on radiation exposure that my grandfather’s wife recalled the stories about his childhood in Baltimore and the radium rods put up his nose to treat his allergies.
At the time, I was a graduate student enrolled in an interdisciplinary Master's program concentrating on Social Justice and Human Rights (think of this as two years studying the critical social theories behind DEI policies). Hearing the story about the radium rods, my still-developing researcher-brain became fully activated.
What I discovered in 2018 was that this treatment was not only real, it was pioneered by Johns Hopkins physicians in the early 20th century through experimentation on children, and it became widely used.
Shortly after that, my mom, grandmother, and I became three of the 177 members of the survivors’ Facebook group; this place where members come to validate one another’s experiences. There is a pattern in their stories of being gaslighted by doctors, told things like, “a medical doctor would never do that to a child.”
THE PROLIFERATION OF THE TREATMENT
The Nasopharyngeal Radium Irradiation treatment was officially tested in 1948 through a Hopkins study funded by the US Public Health Service. To prove the efficacy of the treatment for use to prevent hearing loss, physicians irradiated a sample of 582 3rd grade children from Baltimore city with NRI. During the treatment, a medical professional would insert an 8” long radium-tipped rod up one nostril at a time—this treatment targeted the sinuses bilaterally, and each nostril was exposed for about 10-15 minutes at a time.
The treatment was proven to shrink the tissues (ablation with radiation) at the opening of the eustachian tubes, making it an effective alternative to the surgical removal of the adenoids. At the time, surgical removal of the adenoids, while invasive, was considered the best treatment for conditions like allergies and chronic sinusitis, which could lead to future development of hearing loss.
Once the supposed efficacy of the treatment was validated through the experiment on children, Hopkins physicians began to widely recommend the treatment to doctors and to the U.S. Military.
Throughout the mid-twentieth century, thousands of U.S. service members, including submariners and pilots, would receive the treatment on military bases. In the mid 1990s, the office of Veteran Affairs created a registry for exposed service members, but only after significant push from public health advocates and victims; yet, among doctors practicing NRI on military bases, it was common practice to also recommend the treatment for wives and children of service members. These doctors were, after all, just following the advice of the best, most authoritative medical institution, Johns Hopkins.
One study estimates that upwards of 1-2 million people in the U.S. received Nasal Radium Irradiation as children under the advice of doctors who were acting as they were trained: to trust institutional expertise and science.
Is this not also a form of unchecked bias?
HOPKINS’ LAST WORD: Yeh et al, 2001
In 2021, I spoke to a woman whose son received multiple rounds of NRI at a Southwest Baltimore ENT’s office sometime in the 60s. That office was eventually taken over by another doctor who continued to see many of the same patients, including my informant's son. In the early 1990s, at the age of 32, her son died of complications relating to treatment for facial cancer. He was survived by his wife and their four young children.
After hearing her story and with her permission, I emailed that doctor’s office to ask if he remembered this particular patient. I also asked if he had seen a pattern of cancer in the population of patients he continued to treat from the former doctor.
He replied to my email weeks later to say that he was retiring. He wrote that he did in fact remember the patient with facial cancer, since he’d treated their large family for years, and had built a rapport with their mother, who gave me his name.
Despite admitting that he found the loss to be tragic and upsetting, he followed up with the same link to the CDC website and the 2001 article by Yeh et al, the most recent findings on NRI from Hopkins epidemiologists. He wrote that as tragic as it was for a 32 year old to die of a facial cancer, there was not enough research to suggest that his facial cancer was developed due to radiation exposure decades earlier in his life.
At the time, I was disappointed at this response, since he had not provided new information, only confirmed what I already knew to be true: there would not be research to suggest a connection between cancer and NRI because that research has not been done.
By now I am very familiar with the CDC webpage on NRI and the Yeh et al 2001 article. These are the two main sources that victim survivors share back and forth in the Facebook group—I feel their despair as they post comments back and forth trying to make sense of the disinformation they are reading in these sources.
There are vast limitations of the 2001 journal article where Hopkin’s published its follow up study. These limitations include the major ethical conflicts of interest for epidemiologists from Hopkins to research a treatment the institution itself is responsible for pioneering.The scope of their quantitative data analysis alone was too narrow. As I learned more about research, I realized the depths to which the study has methodological flaws.
I try to consider the biases of the Hopkins epidemiologist, Yeh, who is cited here. What if the truth is that in the late 1990s, she was fresh out of her PhD program and saw a secure future at the institution? What if it seemed too risky to produce research that provided evidence of the institution’s role in a public health crisis? What if changing the main findings meant covering up a health crisis?
What if she instead produced research that served the institutional narrative, the narrative that says:
“While the exposed group had a higher risk of cancers of the head and neck, the rates for cancers of breast, endometrium, ovary, and prostate in those who were exposed were lower than for the non-exposed” (Yeh et al 2001).
While this admittance of the risk of cancers of the head and neck is found nestled deep in the findings section, the conclusion of this study emphasizes the interpretation that there were potential long-term benefits of the treatment, including less risk of types of hormone related cancers.
The implication that NRI could have positive impacts on the health outcomes of those exposed is dangerous, misleading, wrong, and violent in its outcomes. This 2001 article is the main research cited by the CDC.
What then of the good doctors just following the best expert advice?
What happens when terms begin to disappear from the CDC website overnight?
LIFETIME RADIATION EXPOSURE OF A 10-YEAR OLD: THE PITUITARY GLAND
The level of radiation exposure that victims experienced can now only be estimated based on the (also estimated) distance the radium source was to certain tissues and glands. For example, in the most significant follow-up study by Yeh et al. 2001, it is estimated that during a singular NRI treatment, the pituitary gland, responsible for producing and circulating hormones in the body, received anywhere from 440-1780 mSv. Millisevert (mSv) is a measurement for Dose Equivalent Radiation, the average accumulated background radiation dose to an individual for one year. This applies to radiation like that which patients receive while undergoing a CT scan, which by comparison, exposes individuals to about 10 mSv.
Today, most health and occupational safety resources state that a single dose measuring 1000 mSv would cause radiation sickness, including nausea and vomiting. Comparatively, the current U.S. occupational limit of exposure-per-year for an adult is 50 mSv. A federal advisory committee recommends that the lifetime-exposure be limited to a person's age multiplied by 10 mSv, meaning the human body’s lifetime exposure capacity increases with age.
Today, we are more aware of the harms of radiation exposure, so radiation workers wear badges made of photographic film which indicate exposure to radiation. To refer back to the victim survivor’s Facebook post: 88 minutes of NRI exposure would include four treatments in which each nostril was exposed for 11 minutes. Estimating that she was about 10 years old at the time, by today’s standards, a 10 year old child would have a lifetime dose limit of 100 mSv.
So, in one NRI treatment appointment, a 10 year old child’s pituitary gland was exposed twice, receiving anywhere from 880-3560 mSv of exposure. In other words, that 10 year old child received what is eight to thirty-five times more than today’s recommended lifetime dose of radiation.
In the course of the treatments recommended by a doctor to treat allergies or hearing loss, a child could have been, within a single year of only four treatments, exposed to 35-140 times more radiation than we now consider safe for a child in their entire lifetime. Some victim survivors I spoke with remember receiving up to a dozen treatments.
THE TOOLS OF THOSE WHO HAVE SURVIVED:
As the youngest of the 177-member Facebook group, I consider myself a victim, not a survivor. It’s an odd identity to claim so proudly, especially in today’s political zeitgeist: to be a victim.
One may argue that identity politics are themselves an elaborate ruse to create false claims to victimhood. As an adjunct professor who teaches about cultural identity and research methods for social change this is an argument I have become familiar with.
During graduate school I began to frequently consider how research could build realities. I began to see how methodologies are philosophically backed systems for legitimizing and verifying knowledge. In studying histories of social movements, organizational behavior, and research for community change, I developed a lens that has become impossible to remove.
By today’s parlance, this is my “DEI lens,” the one that necessitates the intellectual exercise of understanding institutional inequalities—in short, I am the one at the function who points out, perhaps loudly, a racist or sexist pattern, phrase, or stereotype. In this, I continue the legacies of hundreds of scholars, teachers, lawyers, and activists, particularly Black women, who have shaped the language and tools we currently have for understanding systemic oppression.
From so many before me, I have learned that the knowledge and experience which most shaped this worldview can never be taken from me. Even if words are banned and thoughts policed at a structural, governmental level, it is a form of resistance for our humanity to remain intact.
The victim survivors group is an example of the prevalence of the human impulse to better understand our lived conditions, even when it becomes almost impossible to discuss the relevant issues, whether those issues include racism, homophobia, or a hidden public health crisis.
The language to describe systemic oppressions that we have now, the words lumped into the cultural assault on “DEI,” were developed, built and created in a state of resistance, opposition, and resilience.
Do not underestimate those who wield tools they created in a state of survival.
THE BIAS OF HUMANITY:
Now, I have been a university adjunct professor for five years. I primarily teach writing, but I will always do so through a critical social-cultural lens. I focus particularly on community-based research for social and cultural topics. I find the most rewarding moments of teaching “college writing” come from helping students find the ways in which they can systematically inquire and write about the real issues they care about in their lives.
A few weeks ago as students filed out after a discussion, I went to clean the white board with an eraser that was long-past its prime. I came to the word “bias,” which was mentioned by a student in the Socratic lecture. The red ink just smeared, leaving now even more gruesome disfigurements of the word. I laughed to myself. A student who was still gathering her things, turned to me and perked up her ear.
I pointed at the mess on the board, and said, “this is what it's like when we try to erase our biases or pretend they don’t exist. They may get harder to read or see, but they are still there.”
She smirked, shook her head incredulously (a response I am familiar with from many folks), and said, “have a good weekend!”
All researchers, doing all types of science, introduce bias and subjectivities into their research. There is no knowledge that is not tied to human subjectivity, only the more objective tools that were created within the contexts of subjective human experiences.
The very definition of “subject matter expertise” requires that researchers continue to invest and organize their subjective experiences around their work. We wouldn’t instinctively argue that a cancer researcher who has dedicated 20 years in the lab is introducing unnecessary subjectivities to the work. Yet, arguments like this are often made about research that is about lived experiences or even which asks questions of identity.
I have been told that I am too close to the subject of NRI to research and write about it. I have been told that I am biased, in more ways than one, in a way that will make this research impossible, or worse: unscientific.
I have never once tried to conceal my personal attachments to this work. The thing about bias, worldview, and our “lenses” is that we cannot take them off—we can learn to see them; we can challenge our own beliefs; and we can adapt to new information if we are willing to give ourselves this grace; but, we cannot fully erase or remove the human subjective experience.
The idea that a researcher can be unbiased is the greatest myth, lie, and harm any scientist has ever told—this erasure of the humanity of the scientist creates only an illusion of truth that so effortlessly can conceal a lie, a motivation, or an ethical harm.
We cannot “unbias” ourselves fully but we can state with ethical transparency what our biases are and in what experiences they are rooted. This is perhaps the only way to be accountable to the harm they can cause.
The experience of losing my grandfather to brain cancer that he developed as a result of radiation exposure 60 years earlier changed me.
Waking up to daily reminders that my family is one of millions impacted by NRI gives me a sense of purpose that some days weighs so heavy that it is harder to stand.
Learning that this information was covered up and misrepresented in a systematic, intentional, and violent way, has forever radicalized my understanding of what is at stake in science: it’s human lives.
THE POLITICIZATION OF QUANTITATIVE V.S. QUALITATIVE & THE LIMITS OF WHAT WE CAN KNOW:
The 2025 Senate Committee Hearing on the “Politicization of Funding” at the National Science Foundation, led by the Republican Ted Cruz, specifically critiques and seeks to justify the censorship of science on social and cultural issues. Particularly, these documents target qualitative methodologies, which they say fail to follow basic tenets of the Scientific Method.
The argument that qualitative data is null because of its lack of replicability suggests a fragmented understanding of qualitative data collection and protocols for analyzing, coding, and representing that data.
An informed methodologist can articulate the paradigmatic relationship between research that is quantitative and research that is qualitative—any qualitative data can be quantified as long as a human being can create a tool to measure it in a quantitative way. In fact, at the base of all science are tools humans created for quantitatively measuring qualitative information.
The example that feels the most concrete to the lived experiences of my students in class is the common rubric from the department that I use to assess their essays. Using this tool, I assign a quantitative value to the qualities of their writing and their attempt at the specific writing task.
Would different reviewers,with different subjective experiences, give different grades using the same rubric? I’d expect that.
Does that mean we shouldn’t use the rubric at all? No.
It makes sense that humanity likes to use tools that allow for replicability—in this day in particular it is abundantly clear how much memetics and replicability mean to the cultural and psychological experiences of humankind. Tools like rubrics and surveys allow for replicability across results, not for replicability of human experience. Key to advancing human knowledge is a dialectical relationship between the two approaches to collecting data.
Quant v.s. Qual is not a red or blue pill scenario. Truly, our reality becomes more complex, more holistic, and more integrated when researchers utilize both methods of data collection; when researchers understand the philosophical underpinnings of both approaches as unique yet equally valid and necessary, then our capacity to understand our reality through science expands.
The limit of what we can research becomes the limit of our reality.
Censoring systemic inquiry creates a hard limit on what we can know, and this moral demonization of “irreplicable” science comes at the cost of not asking questions at all.
CREATING THE TOOLS TO MEASURE:
I am not an epidemiologist. There is no way I will ever collect the quantitative data that confirms there are serious health consequences from this treatment. Instead I sit on my bathroom floor with all the qualitative data I need to know there is a problem. I have these incredibly tragic stories of lost loved ones too early or surprisingly late; the detailed nightmares of surviving medical institutions; and the perhaps futile seeming prayers that there be accountability from Hopkins, the CDC, or the US Public Health service.
What if we found a way to measure this qualitative information that I read daily in my bathroom before work? What if there was a tool to measure all the ways I reassemble myself from these words so that I can teach today’s lesson on research for social change?
What if I had a scale for the pain of the elderly people whose parents long ago trusted their doctors who trusted Johns Hopkins physicians? How would these data points hold up against Hopkin’s last word on the effects of the treatment:
“Most studies of radiation have focused on the increased cancer effects of such exposures. However, the results of follow-up of this population with nasopharyngeal exposure suggest the hypothesis that exposure of hormone-regulating organs to radiation in a period prior to puberty may result in a low risk of breast, uterus, ovary, and prostate cancers in later years. Further studies to evaluate the hormonal profiles in irradiated and nonirradiated persons would advance our understanding of the mechanism of hormone-induced cancers.”
Is this the science that we should strive to replicate? If the stories are not enough evidence now, who will run the double-blind experiment on the victims’ suffering?
It's 2025, and when it becomes harder to prove some truths scientifically, I know that our stories will contain the tools to build more ethical realities.
Have you already begun to measure your own hope for change, accountability, or justice?
