I wrote briefly about 25 year multiple myeloma survivor, Mike Katz, earlier this week.  But I didn’t really know him; we only spoke briefly when our paths would cross at receptions, or when he was working in the IMF’s exhibition booth at ASH or ASCO.

Mike KatzIf it wasn’t for his work on behalf of the IMF, Mike wouldn’t have touched so many of his fellow patients and caregivers; he would have been a legendary, long lived myeloma patient, mostly set back in the shadows.  But Mike chose to reach out and try to help.  Great guy.  There are other pictures of Mike, but this one is my favorite…

No one knows this better than Gregor Brozeit.  A reader, friend and sometime co-worker of Mike’s, Greg offered to write an homage to Mike.  I gladly agreed.

It’s long–very long–so I’ve broken it down into two parts.  Here’s Part One:

Living to Make a Difference: Mike Katz (Part One)

By Greg Brozeit

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.

While he was doing this, 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 bisphosponates, 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 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.

Stay tuned for Part Two of Mike’s story this weekend.  In the meantime, you can follow Greg on Twitter: @GregBrozeit or Linkedin: https://www.linkedin.com/profile/preview?locale=en_US&trk=prof-0-sb-preview-primary-button

I’m sure Mike would have appreciated all that you’re sharing with us, Greg.  I’m looking forward to reading Part Two!

Feel good and keep smiling!  Pat