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Patient Turned Advocate, Michael S. Katz, Presented with Partners in Progress Award

Patient Turned Advocate, Michael S. Katz, Presented with Partners in Progress Award

Michael S. Katz, MBA, was diagnosed with myeloma more than 23 years ago, and his struggle with the disease led him to a life of advocacy. During Monday’s Highlights of the Day II session starting at 7:30 AM (E Hall D1), ASCO will recognize Mr. Katz with the 2014 Partners in Progress Award, which honors an individual who has made valuable contributions in cancer awareness and public advocacy.

Mr. Katz was chosen as this year’s recipient because of his efforts to raise awareness and education about myeloma in addition to his participation in the development of clinical trials of new drugs to treat this disease. He currently serves as vice president and as an executive board member of the International Myeloma Foundation (IMF) and is a member of the Eastern Cooperative Oncology Group’s (ECOG) Executive Committee.

Road to Mentorship

It is a big and brave step to move from being a patient to being an advocate. In an interview with ASCO Daily News, Mr. Katz spoke on his transition.

“I was motivated to become an advocate by the people who helped me when I was first diagnosed,” he said. “Advocates had a dramatic effect on my outcome because they gave me valuable information [that improved] my sense of well-being by eliminating my panic and fear.”

Mr. Katz noted that the simple act of meeting individuals who had successfully dealt with the disease and could identify potential treatment options made all the difference. He remembered his reaction to the help and thought, “If they could do that for me, why couldn’t I do that for someone else?”

Specifically, Mr. Katz cited two individuals who led him to advocacy. The first is the late Francesca M. Thompson, MD. Dr. Thompson was a renowned orthopedic surgeon who was diagnosed with myeloma when she went in for routine blood tests. In her book Going for the Cure, she chronicles her experience as one of the first patients to receive an autologous bone marrow transplant. She had a monumental effect on Mr. Katz’s life after his diagnosis when she spoke with him about the basics of myeloma and helped him reach a decision on how to treat serious bone lesions.

The second individual is Susie Novis, the founder and president of IMF. Mr. Katz recalled when he first reached out to her and asked how he could help.

“She brought me in to help IMF set up its database and [introduced me to] the work the Foundation was doing with seminars for patients and their families,” he said, stressing that those very early, very important experiences have led to years of involvement in these seminars. “Being in a room with 200 patients with myeloma and informing them that [they] can live well with this disease over the long term is incredible.”

Offering Support

Mr. Katz cited that the highlight of his advocacy is the connections he has made and continues to make with individuals during the patient and family seminars.

“Having that personal experience of connecting with someone like that and actually being able to help them is incredible—there’s nothing like that,” he said.

Despite the heavy topic, Mr. Katz remarked on how the discussions become easier with practice.

“I always start off saying I was diagnosed with myeloma in 1990, and then I pause and wait for them to do the math,” he said. “That tends to be universally effective as an opening line and immediately helps people realize that the prognosis need not be grim.”

In addition to the support groups he manages, Mr. Katz oversees two listserves for the Association of Cancer Online Resources (ACOR). ACOR is a collection of 142 online communities broken up into disease areas that totals more than 70,000 members. The website offers a way for people affected by myeloma to connect online for peer-to-peer support. Mr. Katz feels that online communities are great outlets for patients and caregivers because not everyone can physically get to a support group or a seminar.

Mr. Katz also served for 7 years on the National Cancer Institute’s Directors Consumer Liaison Group and was the group’s first chairman.

An Advocate’s Role in Clinical Trials

Mr. Katz’s advocacy work involves supporting patients and educating the newly diagnosed, but he is also involved in clinical trials.

“Cancer research and advocacy are hit-or-miss activities, with the big wins few and far between,” he said.

His big hit came with the E4A03 clinical trial that conducted a head-to-head study comparing the standard dose of dexamethasone (40 mg for 4 consecutive days with 4 days rest for 28 days) to a low-dose regimen (40 mg once every 7 days for 28 days). After speaking with peers in his IMF support group and referencing his own experience with a low-dose dexamethasone treatment plan, Mr. Katz successfully convinced the chair of the ECOG Myeloma Committee who was overseeing the trial to introduce the head-to-head comparison of the doses.

There was a 10% higher first-year survival rate for patients on the low-dose arm. Although the study was done in the upfront setting examining the lenalidomide/dexamethasone combination, it changed the global standard of care for the use of dexamethasone in all disease stages and in virtually all combination regimens.

In addition to his work with the patient support groups, speaking at patient family seminars, leading the research advocacy efforts at ECOG, and consulting on various patient outcome–focused initiatives, Mr. Katz has been collaborating with advocates, statisticians, and clinical trial developers to establish objective metrics for the accrual of underrepresented populations in clinical trials. The team is taking publically available data on accrual of trials through the Surveillance, Epidemiology, and End Results program, U.S. census data, and cooperative group data to determine the mix of patients accrued to trials by disease and then evaluate actual accruals against the targets.