Remembering Multiple Myeloma Patient Advocate Michael S. Katz, MBA

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Michael Katz, MBA

The results from ECOG’s E4A03 clinical trial led to a change in the standard of care for the use of dexamethasone, improving the quality of life for myeloma survivors and earning Mike a lasting legacy as a champion of patient care.

I first met Michael Katz, MBA, in 2004, 3 years after my brother, Dom, was diagnosed with multiple myeloma, and we were at a crossroads in his care and needed advice. Although an experimental regimen of thalidomide (Thalomid) and dexamethasone had successfully put Dom in remission for a year (the combination was U.S. Food and Drug Administration [FDA] approved in 2006), and a course of bortezomib (Velcade) had also been briefly successful in containing his myeloma, now the cancer was on the move, and we were looking for treatment options.

Dom’s oncologist was recommending a bone marrow transplant, but the idea of going through the rigors of a transplant, which offered no guarantee of a cure and carried potentially life-threatening risks, was so daunting to Dom, he wanted to try less aggressive therapy if possible.

It was through a patient network at the Multiple Myeloma Research Foundation that I learned about Mike Katz and the multiple myeloma support group he was leading at St. Vincent’s Cancer Center in New York, where Dom was receiving his treatment. It is not an exaggeration to say that meeting Mike was a turning point in what turned out to be a 10-year odyssey of hope and despair as the disease toggled between stable and active, and I have no doubt that Mike’s unfailing advice and support helped extend Dom’s life 5 years beyond his prognosis.

Mike was the epitome of what could be accomplished when patients become active participants in their health care, and his take-no-prisoners approach when it came to out-smarting myeloma was legendary. After all, he had been outsmarting the disease for 25 years, a feat he attributed to unprecedented treatment advances in the cancer, until his death from complications of myeloma on April 26, 2015. Mike had also been successfully treated for colorectal cancer in 2008.

Advocating for Patients

When Mike was first diagnosed with myeloma in 1990, treatment options were limited to chemotherapy, bone marrow transplantation, and radiation therapy, and there were no patient advocacy groups or Internet resources to turn to for information and help. “It was a very scary and lonely time,” Mike said when we talked last year, soon after he received ASCO’s 2014 Partners in Progress Award in recognition of the contribution he had made in cancer awareness and public advocacy. (See “Cancer Survivor and Patient Advocate Michael S. Katz, MBA, Has Helped Alter the Standard of Care for Myeloma Survivors,” in the August 15, 2014, issue of The ASCO Post.)

Mike was drawn to patient advocacy after receiving advice from the late ­Francesca M. Thompson, MD, who was a myeloma survivor and among the first to undergo an autologous bone marrow transplant. Dr. Thompson had helped Mike reach a decision about his own treatment strategy, and the experience of talking with her “was so powerful and I felt so grateful, it got me thinking that I could do the same for others,” said Mike.

He began working with the International Myeloma Foundation (IMF) and became a member of its Executive Board. His involvement in the IMF led to his work as a patient advocate for the Eastern Cooperative Oncology Group (ECOG), where he was elected Chair of its Patient Representative Committee and was later made Chair of the Coalition of Cancer Cooperative Groups’ Patient Advisory Board. Mike was also appointed to serve as Chair of the Director’s Consumer Liaison Group at the National Cancer Institute and selected as a member on the Drug Development Patient Consultant Program at the FDA.

Changing the Lives of Multiple Myeloma Survivors

Mike’s work with ECOG led him to propose a clinical trial comparing lenalidomide (Revlimid) and standard-dose dexamethasone with lenalidomide and low-dose dexamethasone in newly diagnosed multiple myeloma patients. The low-dose dexamethasone regimen had been successful in keeping Mike’s myeloma from progressing, and he had been getting similar feedback from patients in the IMF’s support groups and on the listservs of the Association of Cancer Online Resources he was overseeing, and he wanted to test the two doses in a randomized study.

The results from ECOG’s E4A03 clinical trial,1 which found a clear survival advantage in the lower-dose dexamethasone arm, led to a change in the standard of care for the use of dexamethasone in all disease settings and in all dexamethasone-containing combination drug regimens, improving the quality of life for myeloma survivors and earning Mike a lasting legacy as a champion of patient care.

Mike was also instrumental in raising awareness of bisphosphonate-related osteonecrosis of the jaw, a rare but serious side effect linked to the use of pamidronate and zoledronic acid. And in 2007, in response to concern over bisphosphonate-related side effects, ASCO updated its clinical practice guideline on bisphosphonate treatment for multiple myeloma to include a discussion of osteonecrosis of the jaw, recommending that most patients receive bisphosphonate treatment for no longer than 2 years.2

A Source of Courage

For me, Mike was a lifeline when Dom’s disease was escalating out of control, and I questioned whether we had chosen the appropriate course of treatment. He was the example I could point to of someone who had beaten the odds and was seemingly indestructible, overcoming cancer not once but twice. His resolve gave us the courage to keep pushing forward, even as Dom’s cancer overwhelmed him.

When I saw Mike at the 2014 ASCO Annual Meeting, the challenge of keeping his myeloma from overtaking his body was clearly taking a toll. He looked a bit older and more fragile than he did a few years ago, and he was dependent on a mobility scooter to get around. But his determination to live and his dedication to serving the needs of myeloma survivors were as intact as ever.

“I’ve always chosen to live my life as if I didn’t have cancer,” said Mike. “I just face forward and try to do everything I want to do, working around symptoms and treatment side effects. I’ve been a patient for so long, I’m much better now at managing those things.”

Mike Katz is survived by his wife, Susie, and sons, Jason, Jeffrey, and Jonathan. ■


1. Rajkumar SV, Jacobus S, Callender N, et al: Phase III trial of lenalidomide plus high-dose dexamethasone versus lenalidomide plus low-dose dexamethasone in newly diagnosed myeloma (E4A03): A trial coordinated by the Eastern Cooperative Oncology Group. 2007 ASCO Annual Meeting. Abstract LBA8025.

2. Kyle RA, Yee GC, Somerfield MR, et al: American Society of Clinical Oncology    2007 clinical practice guideline update on the role of bisphosphonates in multiple myeloma. J Clin Oncol 25:2464-2472, 2007.