This Substack, Moving Forward

We trust science as long as it tells us what we want to hear

We want our truths fair and balanced as long as our notions lie within it

~ Patterson Hood, What It Means

When Sarah Newbury died in 1844 after four years suffering with an unknown, but obviously cruel disease, once it was identified decades later, it turned out that she lived longer than what the average myeloma patient experienced a century-and-a-half later.

Until the mid-to-late 1990s, almost all medical school graduates steered clear of treating myeloma. Most of those who did were assigned to do so by their superiors; it was not a choice. Knowing virtually all the patients they might treat would likely die within two years was not why they entered the field of medicine in the first place. And for those who were in it for the money, there wasn’t much to be made treating myeloma.

Today it could be reasonably argued that more hematologist-oncologists and researchers are entering the field of myeloma each year than the number that cumulatively existed in all of history before the 1990s. On the other hand, the pioneers in myeloma were setting the stage for later progress although much of their learning was not leading to much tangible success in clinics.

If a family tree of medical professionals working in myeloma today existed, virtually all of them would be connected in some way to three integral pathfinders: Robert Kyle, Bart Barlogie, and Kenneth Anderson.

Kyle’s early life and professional experiences are fundamental to understanding the subsequent history of myeloma. He is to myeloma what Francis Bacon, credited with identifying and defining the scientific method, was to science. Others worked in the field and made significant contributions before Kyle, but he was the one who gave shape to the field like no other.

A few of Kyle’s contemporaries, like Daniel Bergsagel and Robert Alexanian, made seminal contributions and were responsible for training the next generation of myeloma specialists. I intend to write more about each, but in my opinion, one can’t understand myeloma without knowing about Kyle.

Barlogie’s influence on myeloma is inarguable. He applied the single-minded genius of Don Thomas’s visionand determination in bone marrow transplantation – which, in myeloma owed much to Ray Powles and Tim McElwain – and combined it with the best available medications and techniques to challenge the status quo of his time to eventually make his basic philosophy of aggressive treatment obvious to all.

And although I have so far written little about Kenneth Anderson with the exception of one extremely consequential episode in the history of stem cell transplantation, I plan to explain further the far-reaching consequence he has had on not only myeloma, but hematology-oncology at large. As a physician, scientist, and administrator, few have had the impact he has had in any field of cancer.

Initially, my vision was to create a Mount Rushmore-like analogy with Kyle, Barlogie, and Anderson set in place and planned on identifying the fourth pioneer to fill the one spot left. I realized, however, that it was the wrong analogy. There are many more than one person who could take that place. The quest to understand and conquer myeloma is world-wide.

I decided to start with an understanding of the role France has played in influencing how myeloma is researched and treated. Although he was not the first in France to take on myeloma as a professional task, Jean-Luc Harousseau was the key to propelling the nation forward as an unquestionable beacon of hope and progress, a light that continues to shine brighter than ever today.

Those lights are glowing throughout the world. I’ve highlighted some stories about physician/researchers, Matthew Drake and Suzanne Lentzsch for example, and have many stories in various stages of completion about others – well- and lesser-known as well as around the world – from Singapore to Australia to South America to Europe to North America – demonstrate how the effort to cure myeloma is simultaneously deeply personal and inarguably global.

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I have not yet written about the details of how the application of thalidomide has transformed myeloma, both in medicine and public policy. After a conversation with one of my subscribers late last year, I realized that I made the worst mistake any writer can make – I assumed too much of my audience, failing to make the connection of why it is essential in the story of myeloma. People diagnosed today, perhaps even young medical graduates, may not understand its lineage or significance.

So, to be clear, immunomodulary drugs (IMiDs) like lenalidomide (Revlimid), pomalidomide (Pomalyst), and the new emerging drug, iberdomide, all have their scientific roots embedded in thalidomide and its story. The drug is rarely prescribed in the United States now, but it is still part of standard myeloma treatment in many countries, still essential in less affluent parts of the globe.

That’s why I felt understanding its history, not just in myeloma, and wrote (what I consider to be my best and most important story) on the only physician in the world who survived in the womb when his mother was given a small dose and later became an important part of getting it approved as a myeloma therapy in Europe. It is impossible to appreciate the history of myeloma without having an understanding of the story of thalidomide.

There is, however, one more important, universal lesson of the thalidomide story that calls into question what the responsibilities of the myeloma community are to itself and humanity. Does a myeloma diagnosis, the choice of treating and/or researching it as a profession bring a responsibility or duty with it? More specifically, does intimate knowledge or experience of the disease impose – or are individuals willing to accept – obligations beyond the personal? I think it does, and that’s a big reason I write.

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Does the myeloma community, for example have a debt to pay, an obligation to those who died or were disabled by exposure to thalidomide before they were born? Does it have a duty to see the living victims (that’s the wrong word, but I can’t think of another right now) as part of their legacy? I think the answer is yes. But experience has shown the answer to be a cynical no.

Moreover, there is a bigger question that must be acknowledged and addressed. At its core, myeloma is a cancer associated with modern life. Although evidence of myeloma has been found in the bones of ancient Egyptians, for example, I think it is more than significant that Sarah Newbury lived in one of the first industrialized societies in London. It can never be proven, but experts will admit in private suspicions that the polluted, grimy reality of 1840s London was a significant factor in Newbury’s disease.

Because of research of the past decades, we know genetics – or more precisely, individual genetic predisposition – has everything to do with a cancer diagnosis. As we near the end of the second century of the known existence of myeloma, it is a given that environmental factors – pollution of all types, living and working around various chemicals essential to every day modern life, or even those that are part of wars, events, and negligence – are key to the existence of myeloma and other cancers and diseases. That’s why one of the first questions patients ask when they are diagnosed with a cancer is, “How did I get this?”

The normal reaction, once they realize the question is mostly unanswerable – we have strong, educated suspicions, but no categorical conclusions – is to be selfish, and I mean that in a non-judgmental way. “What can I do about this?” is a perfectly normal next step. But how many extrapolate decisions about their own disease and treatment beyond themselves?

Should a myeloma/cancer diagnosis cause them to be concerned for others who live near toxic sites like oil and chemical plants, areas of waste disposal; who work in agriculture or other professions where toxic exposures are common; who are born with genetics that are easily compromised by environmental factors? Or should the focus be on one’s self only?

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Questions like these are what led to the existence of disease advocacy. Plus desperation. Never forget that the core of all patient advocacy is desperation. For a treatment. For a cure. For life.

It was the basis for the creation of the first myeloma patient advocacy organization in 1989. Brian and Susie Novis were desperate once they learned Brian had an incurable disease he had never heard of before. Upon meeting Brian Durie, one of the top myeloma physicians in the world, they decided together to create something that was incredibly rare at the time: a patient advocacy organization with the lofty name the International Myeloma Foundation (IMF). Focused first on education of physicians and patients, the reality of their desperation was starkly exposed when Brian Novis died in less time since his first symptoms appeared than Sarah Newbury almost 150 years earlier.

The timing of the approval of the first bisphosphonate drug to strengthen bones coincided with the early days of the IMF and was key to start to propel the organization forward with financial support due to its connections with myeloma patients. This led to the creation of the concept of a myeloma community. The timing of the successful use of thalidomide in myeloma. The addition of Robert Orlowski’s work in proteasome inhibition that led to the approval of Velcade a couple of years later was akin to a booster rocket of a space mission.

Myeloma became a once-neglected and somewhat derided disease that suddenly raised money and visibility of the disease to unprecedented levels. Its patient population of one-to-two percent of all cancer diagnoses grew at a rate and to a level much larger cancer and disease populations could only hope for.

Today three myeloma advocacy organizations, another focused on all hematological malignancies, and the American Cancer Society raise tens of millions dollars annually. Patient advocacy had become a big business and a lucrative proposition for these organizations. It wouldn’t be nearly as rewarding without the active support and influence of the pharmaceutical industry.

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One overlooked and neglected aspect of the pharmaceutical industry’s interest in supporting disease advocacy organizations is the success of grassroots advocates in putting pressure on Congress to double funding for the National Institutes of Health (NIH) from 1998 to 2003. More than ever, this achievement brought much more funding to ostensibly organize the effectiveness of patient voices to having public policies influenced and changed.

Although the American Cancer Society’s (ACS) government relations division took the lead to organize grassroots support for the NIH doubling, the groundwork was largely done by volunteers and lower-level staff of organizations who were assigned to work with coalitions. Pharmaceutical companies took note and significantly increased their funding support for patient advocacy. While they outspent most lobbies in Washington DC and state capitals, few advocates understood that money that went to their organizations came with strings that were mostly invisible to the general public.

Ironically, it also created permanent fractures of the national cancer constituency that was built around the issue of NIH doubling. Rather than having patient interests drive public policy decisions, they were, in reality, shaped by the financial goals of the pharmaceutical industry. This deserves to be explained in greater detail. I will write more about this in coming months.

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As many of you have noticed, this Substack is changing. When I started, I thought I knew its purpose: myeloma history – the people, ideas, frustrations, and progress – explaining why it mattered to the story of cancer itself, perhaps even larger every now and then. In the course of writing articles, however, I realized being affected in some way by myeloma does not exist in isolation. Its story, unintentionally or not, is subject to the whims of other trends and issues. That’s part of the story, I think, that has to be documented and told.

Myeloma, cancer, disease and all that these topics entail do not exist in isolation. Nor are they purely about science, medicine, personalities, or any categorization, for that matter. As readers of this Substack have noticed, I’ve had a very difficult time finding my voice amid the terror I have felt since last October.

The recent American election weighed heavily on me. I’m sure many of you thought, “Why is he writing about this? It has nothing to do with myeloma.” Admittedly, I went out on a limb by deciding to share these thoughts.

We are all – Americans and people throughout the world – living through an era that will be unlike any other in recorded history. Indeed, the very idea of “recorded history” may well be up for grabs. For the first time since the Civil War, a radical shift is taking place that will fundamentally alter the very nature of American governing, one that will commence today. Whatever happens, it will affect everyone on the globe to some extent, much more if you are or have interests that intersect with Americans.

The future is as murky and uncertain as it was before any world war. That makes it impossible to concentrate on one small sliver of history, to carve it out a separate, isolated niche. Based on what we know now, it is reasonable to expect the processes of American governing to change more in the coming year than since the Constitutional Convention of 1787. (Recently I have been finding myself pining for the comfort of my college days when all we had to fear was global nuclear annihilation.)

The pendulum of American public life has swung far out of rhythm and threatens to crack. For example, less than 50 years ago Jimmy Carter was elected in part because of his pledge to honor human rights – wherever they may be. This has now been categorically rejected by a majority of voting Americans. The nation is treading on philosophical ground once considered inconceivable.

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Writing this in the nation that adopted me, in which I grew up learning to respect and appreciate, will likely change in a way that I will have to accept for the rest of my life; we are not entering a four-year presidential term but a complete restructuring of governing, living, and existing, not only in this nation, but everywhere.

This realization caused me to make occasional detours from the strict confines of myeloma and cancer history/commentary that I began this Substack journey. I will continue to write about myeloma history, but have come to the realization that it does not exist in isolation; living and thinking as such is no longer an option.

My background before becoming a part of the myeloma community – and what led me into it – was in civic education, government and public policy. The college textbook for my Introduction to American Government class was titled A More Perfect Union. I believed and tried to live my life toward that goal, one I felt, despite all its imperfections and foibles, applied to the United States and its standing in the world. Always striving.

The experiences in Washington, DC on January 6, 2021 broke that belief and confidence once and for all. I realized we Americans are no different or any more insightful than anyone, anywhere. In May 2021, at the intermission of a classical music concert I was attending alone in Germany, my seatmates asked me if things were “getting better” in the United States. I responded, “I believe, sadly, that at noon on January 20, 2025, will become a fascist state and it might well be up to Germany to save democracy for the world.” (The was before the leader of the neo-Nazi German Alternative für Deutschland [AfD] was invited to the presidential inauguration). We all laughed uneasily. Now we are here.

Although I have more than thirty articles at various stages of completion, I realize, if I am to continue writing on this Substack, that I must try to explain these issues, if only to keep some semblance of personal integrity. Whether you agree or disagree, are indifferent about them, my goal is that you will find them to be insightful.

And if you do, I hope you will consider becoming a paid subscriber if you think what I write is worth the cost of a monthly fast food meal. (I am incredibly grateful to every paid subscriber!) I do not receive, nor do I expect to, get financial support from any advocacy groups, institutions, pharma, or philanthropic entities. That hopefully will free me up to write honestly, about their positive and negative impact on myeloma’s patients and science.

My intention is to be as open and honest as I possibly can, without any strings attached. Regardless of what brought you here – whether as a patient, as one who cares deeply for one with the disease, or has professional interests in myeloma and cancer – I hope you will continue to check in.

When I made a goal of writing a book about the history of myeloma, one myeloma expert I greatly respect and admire wrote, “I am a bit worried that writing one about myeloma will not attract a lot of readers.” Unfortunately, this expert turned out to be correct.

When I started this Substack, my goal was not only to share some of the stories I was working on, but also to lay out some themes to help me organize my words and thoughts to put together a book manuscript. But now I believe the stakes, if you can believe it, are higher than ever.

Issues including drug prices, research progress – indeed the very definitions of what is true and factual, access to health care, racial disparities, and international cooperation are all on table now, especially for Americans. The actions and decisions made in one area seemingly far way will reverberate in personal lives as in no time since 1945.

As a former civic educator, I believe much of frustrations people experience about public policy are grounded in a ignorance of how and for what purposes government is supposed to exist. As a myeloma advocate, I believe patients are both inspired and misled by what they learn from present news sources.

I hope you will continue to join me as I work these issues out with and for you.