Michael Katz: Living to Make a Difference
Today marks the ninth anniversary of Michael Katz’s death. If statistics are correct, that means more than 300,000 Americans have been diagnosed with myeloma since Mike’s passing. I would bet very few know who he was, what he did to benefit their lives, and why he was an integral part of the histories of myeloma, cancer, and disease advocacy.
In my opinion, Mike was the most significant myeloma patient who ever lived.
I am republishing the obituary I wrote for Mike’s family on April 28-9, 2015. It was first published in two parts on Pat Killingsworth’s blog/web site. Pat was a myeloma patient I got to know near the end of his life. He was diagnosed in the U.S. while I was working in Europe. In the short time I got to know him, Pat also got to know Mike and admired him greatly.
It’s worth remembering Mike. His deeds still have meaning in the lives of cancer and myeloma patients everywhere.
We all have moments that stay with us throughout our lives; we remember exactly where we were when we found out about them. During my lifetime, these include Neil Armstrong’s first steps on the moon, the day President Reagan was shot (I never voted for him, but he was my president), the Challenger explosion and, of course, September 11th.
My pivotal personal experiences include the births of my two sons and when the beloved headmaster of the school who recruited me to teach out of college died in a car accident—the same day that the Challenger exploded. These were course-changing events in my life.
Another happened at 11:14 pm this past Sunday when I learned Mike Katz had passed away. Six hours later I was on my way to the airport to attend his funeral.
If you know what myeloma is, you may know something about Mike. If you don’t know his name, you have benefitted immeasurably from his work. And if you know about cancer, you should know that his impact on this larger universe has been indelible and extraordinary.
I first met Mike in 1998 and soon became one of the few to know he was “the unknown patient,” the International Myeloma Foundation’s (IMF) newsletter correspondent. But, as I quickly learned, there was so much more to him and I had a privileged box seat to observe one shining part of an incredibly multi-faceted life.
The part I saw was a humble, toiling, genial and funny man—with a dry wit and deadpan delivery rivaling the best of George Burns—who happened to be diagnosed with rare form of cancer at a time when there was little hope he would live another two years. When I got to know him, he had already outlived that prediction by six years. He miraculously survived 25 years with myeloma (and, more recently, a bout with colorectal cancer).
Like virtually every patient, the first time he heard the word myeloma was when he was diagnosed with the disease. He was 37, happily married with three sons between the ages of five and ten, active in his synagogue and a successful management consultant with one of the most prestigious firms in the world. An incurable cancer wasn’t part of the plan.
Sure, he wanted to focus on what he needed to prolong his life. Somehow, he perceived there was more to it. Thankfully, he possessed the inner strength and moral compass to guide him in the right direction. He chose selflessness over selfishness; he reached out to others going through similar journeys. In doing so, he found a profound way of making differences that multiplied exponentially.
He reached out to Susie Novis, president of a garage-based “group” of a few people who ambitiously called themselves the International Myeloma Foundation. Mike was used to working with corporations with budgets ranging from the millions to the billions. It must have been something of a shock to realize that the only patient support “organization” out there was almost literally held together by a wing and a prayer. But for him this was just another doable challenge.
Mike was one of the pioneers who understood the potential applications of this new-fangled concept and tool called “the internet.” He assisted wide swaths of the corporate world to harness and exploit its potential; he knew how to link it to other parts of their business structure.
Now he would be integral in creating a myeloma “community” when none had existed before. Key was Mike’s creation and monitoring of an internet-based list-serve, where patients could go to communicate with each other to get information about experiences and treatments.
Yet there was one non-negotiable condition: his contributions would have to remain secret. His wife, also named Susie, knew about his disease. But virtually his entire family didn’t; not his beloved mother, with whom he faithfully attended operas at the Met, or his young sons. Few of his business colleagues knew. Remarkably, he kept the secret for years and only shared it with his sons when his oldest, Jason, was preparing to attend college.
It wasn’t easy because he took on many visible roles. In the late 1990s, Mike became the first-ever chair of the National Cancer Institute’s (NCI) Director’s Consumer Liaison Group (now known as the NCI Council of Research Advocates). He was a close advisor to then-NCI Director Richard Klausner. Mike became arguably the most knowledgeable lay person about a specific disease who ever lived. He pioneered the practice of including patient advocates on clinical trials creation and supervision.
Among the significant contributions he made was as a leader of the Eastern Cooperative Oncology Group (ECOG), an umbrella organization that coordinates cancer clinical trial activity. It is one of the most influential associations of its kind in the world, not just the United States. Mike also advised the U.S. Food & Drug Administration on drug development.
And while he was doing all this, he was an IMF board member and developing the data base, patient education tools, outreach, and web capability. The IMF had outgrown the garage to become the world’s leading resource for myeloma patient information and support.
He was a behind-the-scenes influence in putting together the content for the IMF’s Patient & Family Seminars. These meetings were ground-breaking. The IMF was the first patient organization—in any disease, anywhere in the world—to bring together experts to speak to patients and caregivers. Mike was an important bridge builder who taught experts how to speak to regular people. Now this concept has been copied by virtually every disease advocacy organization in the world.
And he didn’t forget his neighbors in the New York City area. Mike founded one of the first local myeloma support groups in the nation. He personally led the meetings whenever he was home. When he started the group, few support groups existed. Today there are approximately 200 in the U.S. and additional thousands representing virtually every disease category.
Mike became a fixture at the annual American Society of Hematology meetings—the world’s largest annual gathering of specialists in blood disorders—with the “studio” he set up at the IMF booth. He interviewed experts from throughout the globe to provide updates on their research in formats that were accessible to physicians, patients, and caregivers. Anyone who was anybody made time for Mike’s questions—and they often got the benefit of HIS opinions.
In the past 17 years, arguably more advances have been achieved in myeloma than in any other form of cancer. Mike’s fingerprints can be found all over this success. Two particular incidents show how all of his roles converged. The first occurred in the early part of the 2000s.
By the mid-90s, a new class of drugs called bisphosphonates, which strengthened bones, was beginning to be used in myeloma therapies. The new drugs didn’t treat myeloma but were effective in treating a vicious symptom—bone degeneration which often led to fractures, compressions, and collapse.
The drugs gave myeloma patients a significant improvement in quality of life. As Mike looked over messages in the list-serve he was administering, he began noticing a pattern in the comments: a noticeable number of patients were having major problems of jaw degeneration, called osteonecrosis, which led to painful, sometimes catastrophic problems with teeth.
When Mike took the information to IMF Chairman Brian Durie, they agreed something was wrong. After a medical statistician crunched some numbers, their hunches were confirmed. The first medical publication about this cited all three as authors.
Research later confirmed bisphosphonates, while very beneficial in treating bone degeneration, actually had an unexpected side effect for a considerable minority of patients. When too much of the drug was given, some patients developed sores in their mouths that would not heal. So, the administration of the drug was reduced and shortened which, it turns out, does not alter the good it does.
In the larger picture, this class of drugs is among the most widely used for many diseases. It has been determined that bone issues are also very prevalent in, for example, breast and prostate cancers as well as osteoporosis. Today when anyone visits a dentist, one of the questions asked of them is: Have they been treated with bisphosphonates, especially prior to oral surgery? Mike was the proverbial “canary in the coalmine” who first saw the potential problem. Innumerable patients have been saved from unnecessary pain and complications because of his instincts.
I was a witness to the second great clinical achievement for which Mike was largely responsible. Every year at the IMF’s annual gathering of support group leaders, Mike organized a call between patients and members of the ECOG myeloma clinical trials leaders. One year the predominant subject was the drug lenalidomide, which was then the most promising new treatment for myeloma.
Lenalidomide was given in combination with dexamethasone (dex), a long-used steroid with anti-inflammatory and immune system benefits that enhances the effects of certain drugs. But this comes with unpleasant side effects: irritability, sleeplessness, restlessness and sometimes inducing aggressive behavior. In the clinical trial they were discussing, the protocol called for high levels of dex, the doctors reasoning this would boost the effectiveness of lenalidomide.
I can still hear Mike’s words clearly when I visualize him speaking to them over the conference call, “It’s all well and fine for you guys to prescribe such high levels of dex. But speaking as a patient who has taken it, is there any way you could design another arm comparing it to lower doses of dex?” After a bit of discussion, Vincent Rajkumar, the lead investigator in the trial said, “Sure Mike, we can try that.”
Fast forward less than a year later: after comparing the two parts of the trial, they found that patients with less dex had dramatically higher rates of survival and far less side effects. In fact, Dr. Rajkumar admitted this was unprecedented in his experience. The part of the trial with high dex was stopped and all patients were put on the low dex protocol.
The results of this trial have resonated not just in myeloma, but throughout the world of cancer treatment. Dex is still widely used, but less of it more often than not leads to better results. More importantly, it leads to a better quality of life for patients and, thankfully, for their caregivers. Again, it was Mike’s experience as a patient as well as a vocal, educated patient advocate that made the difference for hundreds of thousands, if not millions, of cancer patients throughout the world.
Last year the American Society of Clinical Oncology, whose annual meeting is the world’s largest gathering of cancer physicians and researchers, presented Mike with its Partners in Progress Award, which recognizes significant achievements of advocates in the service of oncology. I doubt there will ever be a more deserving recipient. But recognition was really not Mike’s thing.
He was more into being a good husband and father (uncle, cousin, brother-in-law, and later proud father-in-law and doting grandfather), an active board member of his synagogue, addictive devotee and patron of opera—especially Verdi—and his work. It was a delicate balancing act.
Mike was a master of compartmentalization. He let few people who were parts of one of his life’s roles—professional, personal, religious, patient, advocate—see the other pieces. (My wife Romi, the IMF’s first fundraiser at the time, remembers a vivid anecdote that demonstrates the depth of this: Once while she was working with Mike over the phone fixing some kinks in the new IMF website, she noticed some noise in the background and asked what he was doing. He replied that it was intermission of an opera performance he was attending with his mother. He had some time to work on the problem. He would just tell his mother that he had to talk to a client.)
This all became even more obvious to me when I attended Mike’s memorial service and burial yesterday. As I listened, I realized how Mike was able to live a full life and still only show those around him the segments he chose. I knew that he had faith. I just never realized how deep it was. I know that he loved his community. I just never realized that he took as much time and effort giving back to his neighbors as he did the myeloma community.
And I knew how much he loved his family. I just never realized how extended it was and how he valued every member, no matter how “distantly” related. They were not distant to him. As we listened to the speakers provide a complete picture of Mike’s life, all of us realized how the sum of the parts of his life added up to an unbelievable mosaic of ethical consistency.
What began as a day of overwhelming sorrow developed into a joyous celebration of Mike’s relationships with the people he put at the center of his life. I think Mike would have liked that. The profound, touching act of his sons lowering his pine casket into the ground completed what Mike had been preparing for his entire life: the passage of responsibility to the next generation. And as many of us followed his sons in filling the grave with soil, we all became part of an ancient cycle that reaffirmed our duties to each other. I’m sure Mike understood that better than any of us.
It can be trite to observe that someone made a difference. But Mike made so many. If they were only for the myeloma community—a community that he was integral in building—that alone would have been quite a legacy.
Perhaps the best way to sum up how I think about Mike are found in the words of the historian of ideas, Isaiah Berlin, to explain the world view of 19th century Russian intellectual Alexander Herzen:
“Why does a singer sing? Merely in order that, when he has stopped singing, his song might be remembered, so that the pleasure that his song has given may awaken a longing for that which cannot be recovered? No. This is a false and purblind and shallow view of life. The purpose of the singer is to sing. And the purpose of life is to live it.”
When faced with a death sentence, Mike turned it into a determination to live on his terms. Those terms included all of us.
Photos: (top) Brian Durie, co-founder of the IMF, with Michael Katz (ca. 1996), (bottom) Jonathan, Michael, Susie, Jason, and Jeffrey Katz at IMF ceremony (ca. 1998), courtesy of Susie Katz.
This is so beautiful and a wonderful expression of advocacy. It is so inspiring. Just as there are more drugs, so is the need for continued advocacy to keep medical professionals understanding the impact on patients, the need to adjust dosing and how quality of life is as important.