Diverse Disparities
We often have a standard therapy that fits some quite well, but this same standard therapy leaves many under-, over- or wrongly treated.
Marie von Lilienfeld, Ruhr-Universität Bochum, Germany
“Imagine the following scenario, a sixty-nine-year-old Black female social sciences professor, an active grandmother with two grandchildren, newly retired, recently diagnosed with multiple myeloma. She has no other medical conditions and stable disease, which prompts the question: ‘In what ways does this patient differ from the standard patient population?’” The honest answer? No one is certain.
That was just one intriguing point made by Marie von Lilienfeld, a hematologist-oncologist at the Ruhr University in Bochum, Germany, in a lecture featured on a German podcast. Her topic, Why Therapies Aren’t Equally Effective for Everyone, drew every bit of my attention when she chose myeloma to illustrate her points. Last year, Lilienfeld was named founding chair of the university’s newly created Institute of Diversity Medicine. Her academic position is, to my knowledge, unique in the world.
Lilienfeld reframed the overall picture of cancer disparities – differences in rates of diagnoses, prognoses, treatments, outcomes, etc. with new perspectives. Her evolving vision, in my view, is simultaneously subtle and radical. It expands and incorporates American notions of disparities.
Race, for example, is not generally a statistical category in Germany. Germans are more likely to associate disparities with gender, class, age, and migrants from other places. Instead, Lilienfeld uses the term “diversity medicine” in place of disparities. Her conception is less about correcting injustice and more about optimism of realizing unmet opportunities. Doing something substantive in the clinic first requires a recognition of what the problem actually is.
The question posed about the patient above does not really have answers. Treatment decisions about her will “have clear evidence gaps.” In the United States, these gaps are categorized as race, class, and gender. Could it be that these labels are too broad, limiting, or exclusionary? Can it be possible that they compound or misunderstand problems rather than address them?
In reviewing the history of modern medical research, Lilienfeld noted it has been conducted primarily on “young men, overwhelmingly from Western academic circles.” This “average” male is white, weighs around 155-160 lbs., and is five-feet-six-inches tall. “Good scientific reasons” exist why medical research is done this way: “to create a very clear and repeatable standard therapy.”
Standard cancer treatments generally led to more effective treatments and better outcomes for our theoretical Western man. Plus, he has the “advantage,” medically speaking, of never being able to become pregnant, just one of many biological differences between males and females.
That’s good news for men who fit the profile, observed Lilienfield, but “everyone else is underrepresented, and we know relatively little about them: women, children, older persons, persons with disabilities, cognitively impaired persons, people with different geographical origins, and so on. These patients are more likely to be underrepresented in clinical studies.”
In the United States, these differences are generally grouped into categories of race, class, and gender. In Germany “we also have difficulties in defining it.” For example, race is a social construct, not one that is definitively identifiable. Applying the concept of race – which have come to include ethnicity and migrants from other cultures – to individuals is either personally expressed, imposed by others, or some combination of both. Not being able to scientifically or genetically define race, though, does not mean it does not exist. As any American can tell you.
Class in this setting is about more than social status or income. Poorer persons, regardless of race, are much more likely to be diagnosed with cancer, if they are diagnosed at all. They are more likely to be diagnosed too late because they do not have the means to have a timely one. And their range of treatments and access to medical care is significantly lower than those with more means.
Categorizing – or phenotyping – is essential to medical science research. “We do,” Lilienfeld emphasized, “have very good data on people between fifty-five to seventy, but far less for younger or older persons. We know very little about children. We know so little about people in so-called marginalized groups because of the difficulty of defining them.”
On the other hand, we do know that certain geographical/ethnic factors are prevalent in genetics. Blood diseases like thalassemia, which inhibits blood from effectively distributing oxygen, are found mostly in Mediterranean and Asian populations and their descendants throughout the world. Sickle cell anemia, in which red cells become sickle-shaped and are unable to function normally, is almost exclusively a disease affecting Blacks. And in myeloma, researchers have found distinctive genetic characteristics shared by subpopulations of patients.
Lilienfeld became interested in what she later labeled diversity medicine as a member of faculty of the University of Jena in eastern Germany. She formed an interdisciplinary working group, initially focusing on the obvious categories of race, class, and gender, but also factors like age and co-morbidities. Non-quantifiable issues like bias – in research as well as society, preconceived notions about other people, and aggressions kept coming up in their research.
As Lilienfeld reflected on their work, she questioned “how appropriate it was to separate biology, psychology, or sociology from medicine or whether they were in conflict.” This led her to question the exclusive focus on race, class, and gender. She concluded medical research and treatment as currently conducted may be inadequately suited to solve, much less address, these issues.
Lilienfeld applied a sociological concept, intersectionality, as a method of getting a more accurate picture. Intersectionality takes into consideration multiple types of disparities to form a more accurate picture than just one of those categories alone do.
Adding genetics to the mix deepens complexity as well. Studies in the United States have revealed Black myeloma patients are diagnosed an average of four years younger than whites, respond better to some treatments, worse in others, and are less likely to receive newer therapies.
Being Black is not an isolated cause of disease, however important that might be. Non-medical factors like insurance, wealth, history, geography, family life, prejudice, age, level of education, and travel to get care are just some of the factors that “intersect” differently in every person.
This begs another question: Do researchers of these various disparities have the range of knowledge to actually conduct it effectively? More precisely, should hematologist-oncologists and PhDs in labs be doing their work in the relative seclusion of the academic fields they understand best? Obviously, they have great knowledge about scientific elements of their work. But what training and education do they have in, for example, sociology, history, economics, political science, and other areas of expertise related to disparities?
Is personal life experience and all that it entails valid or enough? Optional or required? Or is it too subjective for science to incorporate? One truism of medical research goes back to its earliest days: it must be objective, based on findings of facts and statistics, both essential in creating hypotheses.
How does, for example, having good insurance, bad insurance, or no insurance impact outcomes? Lilienfeld added, “poor people are at greater risk to develop cancer, this is especially true for men, and those who live in strongly neglected socioeconomic communities will have a higher risk of cancer.”
While our focus here is cancer, this is true across the medical spectrum. It is well known in cardiology, for example, that a woman who had a heart attack, is less likely to survive than a man, “especially if she has a male physician.”
Context matters more than we might think. Personalized medicine is a hot topic in cancer, and especially myeloma, it refers only to the medical and scientific information gathered on a patient. Tailoring disease treatment to personal genetics and disease characteristics might not be enough. Where and how people live, what they do day-to-day, and all the factors that go into daily life may matter as much what doctors see on medical charts.
I wanted to share Lilienfeld’s ideas, especially for those who don’t understand German. Her arguments caused me to reassess how we, as Americans, frame our views about cancer disparities. I’ll have to admit to a bit of unease about this topic; it was literally the issue that began my professional myeloma life.
I didn’t know much of anything about myeloma in 1998, but had a wide range of experience in teaching, politics, and government. I knew a good lobbying talking point when I saw one. Once I learned about significantly higher myeloma incidence and prevalence in Blacks as compared to whites, I made it the subject of the first myeloma position paper I ever wrote.
What I didn’t write was that some myeloma specialists referred to myeloma as an “old Black man’s disease” in private with colleagues. Their observations were not meant to be disrespectful or condescending; it was more of quiet, primal scream of frustration. No one really understood why. It was then that I first became familiar with racial disparities.
It was then, as it is now, common knowledge among myeloma specialists that Blacks had at least twice the risk of being diagnosed with myeloma. Black men alone approached three times. Treating physicians were fairly certain an unknown number were never diagnosed at all. People were suffering and dying of myeloma but never knew they had it. As it was told to me years ago by one oncologist, “The average elderly Black man with back pain would be told, ‘That’s natural after a life of hard work. Here are some painkillers, Get some rest.’ Many physicians didn’t take them seriously or do the necessary tests to find out the source.”
Racial disparities research has become a specialty of its own in the United States. An ever-growing handful of researchers are making it central to their careers. Advocacy organizations have created education and publicity campaigns. Pharmaceutical companies are putting time, money, and staff into increasing Black participation in clinical trials.
After more than twenty-five years, however, I have come to a cynical conclusion about racial disparities. To me, it’s much like the cliché about the weather: everybody talks about it, but no one seems to be doing anything about it. Admittedly, that’s far too harsh, as the examples above explain. But in terms of outcomes, of closing evidence gaps so prevalent in myeloma research and treatment, the knowledge gained hasn’t moved the theoretical needle much, much less has been translated into clinical practice.
Perhaps that’s why Lilienfeld’s idea of diversity medicine struck me so deeply.
Have we been looking at cancer disparities the wrong way all along? Are we wearing blinders, much like racehorses are forced to wear, to focus on the track ahead? Do these cause us to miss the big picture because we’re too fixated on false, or at the very least, incomplete categories to guide decisions?
I spoke to Dr. Lilienfeld last month to discuss these questions and her work and learn about what implications they might have. I’ll summarize that discussion in the next article.
Photo: Detail, Portrait of a Freedom Fighter (1984), Julian Schnabel, Toledo Museum of Art