Olympian Training
Victory awaits him who has everything in order — luck, people call it. Defeat is certain for him who has neglected to the necessary precautions in time; this is called bad luck.
Roald Amundsen, The South Pole
Although medical specialists fulfill rigorous medical study, residency, and fellowship requirements, I still doubt most laypersons truly understand the scope of what it takes to become a specialist.
Little time exists for much of anything else and, in the case of myeloma, a wide range of rapid progress does not make research and treatment any easier. Myeloma specialists never stop learning, their professions are endless three year cycles of medical school.
Keeping up with daily reading of studies, treating patients, attending staff conference discussions on patients, in the lab, and attending meetings like ASH are essential. Not doing so runs the risk of becoming functionally archaic, perhaps even obsolete.
Much like Olympic athletes, specialists must have exceptional discipline to train their minds, apply it to their work, and remain at the top of their game. The myeloma community has more than a few great role models who have made this rare, once hopeless disease attractive to young medical graduates to choose as a career path.
If myeloma were ever to have a Mount Rushmore-style monument built, three names would be obvious to anyone with even slight knowledge of the field. I’ve discussed two them and the stories of each will continue to percolate as long as this Substack exists. I’ll write about the obvious third, Kenneth Anderson, after Labor Day.
It is essential to understand that the history of modern myeloma research and treatment begins with one person – Robert Kyle. I wrote a short overview of his early career and will revisit him often in the coming weeks.
Although the treatment paradigm of “watch and wait” no longer dominates treatment strategies, it is vital to understand Kyle’s attention to detail: his longitudinal studies, his mentoring of a generation of myeloma physicians – which continues still, and his unbending scientific ethic of letting facts and evidence speak for themselves has permeated throughout the community.
Kyle’s most important contribution, however, goes back to his North Dakotan, Depression-era roots. His even temperament and universally acknowledged work ethic and honesty was essential in corralling a wide array of opinions to organize a nascent field. Much like George Washington at the Constitutional Convention of 1787, Kyle’s leadership and presence was essential in organizing a global research community, one that is considered by most – not that it doesn’t have its conflicts – to be among the most collegial professional specialties in medicine.
Additionally, we’ve learned about Daniel Bersagel and Raymond Alexanian, two pioneers who discovered melphalan and the first combination therapy, melphalan-prednisone as the first effective, standard treatments for myeloma. Two weeks ago, in my first recap article, we learned about the failed drug they replaced.
Bart Barlogie’s influence on myeloma research and treatment cannot be overstated. He brought a new mindset to myeloma in early 1970s, established a world-class operation in the unlikeliest of places to make it a destination for patients throughout the world. Like Kyle, he started an intellectual “family tree” of myeloma experts that are now in virtually every American state and in nations around the world offering myeloma treatment.
“Twenty-five years ago,” a prominent myeloma expert confided in me in 2013, “everyone was laughing at Bart.” Nothing was more controversial and debated among myeloma circles in the 1990s than what Barlogie was doing in Little Rock. Some patients were taught to be fearful of stem cell transplantation and would do all they could to avoid it. In some cases, patients who had transplants were belittled by those who felt they were dangerous and vice versa.
“Now,” the expert continued, “everyone is doing what Bart was doing then.” His influence pervades every part of myeloma research and treatment activity today.
Using the Mount Rushmore analogy for myeloma, Kyle would be in Washington’s spot, Barlogie in Jefferson’s, with Anderson alongside them. The fourth spot, however, would be up for grabs. Different experts would have various names to add to the mix.
For my money, I’d make the case for France’s Jean-Luc Harousseau. The global influence of the first European myeloma cooperative clinical trials group, Intergroupe francophone du myélome (IFM) has been paradigm-changing. The IFM’s comprehensive clinical trials determined the efficacy of transplants, provided irrefutable evidence of ineffective treatments – saving countless patients from unnecessary, possibly deadly, therapies. Additionally, cooperative groups have proliferated among European nations and Harousseau himself has become a key mentor for the Asian Myeloma Network, a cooperative group of Asian nations established by the IMF.
Harousseau also has experience in government, both as president of his home state in France and as head of the HAS (Haute Autorité de santé), the French health care regulatory body. Wearing governmental leadership and myeloma hats demonstrated the implications of political and budgeting choices on a grand scale.
Limited public budgets meant making choices, not necessarily what he, as a myeloma expert, might well have desired. The experience gave Harousseau a differing perspective. He had long learned to see beyond the situation in front of him, whether in the lab or with a patient in the examining room. Now he added a deep understanding of the entire picture of cancer treatment in France, not just those affecting myeloma patients.
My introduction to myeloma came through working with patients, most of whom were desperate not just for a cure, but to live into the next year. Brad High, the founder of the Philadelphia myeloma support group, was one of the first patients with whom I developed a personal friendship that went far beyond my work. Although he died twenty-two years ago, when I began this endeavor I had the feeling he was urging me on to tell as many stories as I could.
There was no patient story I wanted to tell more than that of Michael Katz. After meeting Susie Novis and becoming the “man behind the curtain” of the IMF, his influence was crucial in shaping much more than an organization. Mike was instrumental in defining the very concept of patient advocacy. In the coming months, however, I’ll post occasional articles of how I believe advocacy has both internalized and widely strayed from the lessons he taught us.
And the story of Sarah Newbury, the first myeloma patient diagnosed long after a case report on her was published – containing the gruesome image of her disease – is essential to fully appreciate how long it has taken to get where we are today. And how far, despite the incredible progress of the past two decades, we have yet to go.
The more I think about it, I may have the Mount Rushmore analogy all wrong. Maybe Mount Olympus would be more appropriate, led by the four titans mentioned above around a large, expanding table to make space for the many significant figures in myeloma today and those that join tomorrow. I’m fairly certain Mike Katz would have been one of the few patients invited.
Although there is more patient participation on advisory panels of government agencies and national cooperative groups, the sheer increasing complexity of studies makes me question whether this is productive or even desirable. But I’ll save that discussion for now.
Experts need to “train” continuously. This is, in my opinion, unrealistic for patient advocates; there is no way studying after a cancer diagnosis can even come close to the education experts have. Perhaps patients would be better served by taking an occasional jog or walk that deepens their appreciation of history and concepts. It is possible to appreciate and understand the important aspects without becoming an expert.
A myeloma diagnosis demands patients have information they can understand or have it explained as simply and thoroughly as possible. I’ve come to strongly believe that when patients orient their lives around a disease, it is possible to lose perspective. Every hour spent on learning about a possible treatment years off is an hour taken away from the other parts of living their normal lives as much as possible.
The legacies and lessons of intellectual giants like Kyle, Barlogie, Anderson, and Harousseau are dramatically increasing the numbers of medical graduates and nurses treating myeloma. Within the next decade, it is reasonable to assume there will be more than 300,000 living myeloma patients. The bright young minds who will begin treating myeloma by then are still in high school. They may not know it yet, but their time from medical school through fellowship training will be their training for their professional Olympics.
Patients will need to trust them and their mentors – unlike decades ago when few treated myeloma and the quality of care could vary widely. Trusting them will be easier knowing the countless hours they have invested in to prepare. They will be learning things and implementing treatments we can only dream about today.
Photo: Detail, The Biglin Brothers Turning the Stake, Thomas Eakins (1893), The Cleveland Museum of Art