“I don’t feel like I’m going to die tomorrow. I have options I haven’t tried yet. My financial house is in order. I have stem cells in the freezer that I harvested years ago. You can only do what you can do, and I try to enjoy the ride in the meantime.”
Mike Katz, quoted in Inside the FDA
Mike Katz didn’t endow buildings, professorships, or research. He didn’t run organizations or give rousing speeches. He was more comfortable being in the audience – preferably at an Italian opera – not in the spotlight.
Nevertheless, Katz was consequential to inspiring clinical practices benefitting countless patients around the globe: lower dosing of steroids in cancer therapy and linking bisphosphonates to osteonecrosis of the jaw. He was the proverbial “man behind the curtain” whose commitment fundamentally shaped the International Myeloma Foundation, who advised the director of the National Cancer Institute (NCI), and was among the first patient advocates included in the Food & Drug Administration’s (FDA) drug approval process.
Katz’s obituary gave a sense of how he compartmentalized his life to become a man of deeds and accomplishment. I closed with a quote from Isaiah Berlin, the first historian of ideas, about living life. It may seem an odd reference. Ultimately it was Katz’s ideas that endure and worth reconsidering. What circumstances existed then? Have they changed? How did we get to where we are?
In trying to answer those questions, I hope to convey why I think Katz was the most consequential myeloma patient ever. Nine years after his death, many of his ideas have become routine. Their connections to him have largely been forgotten. Until, I hope, now.
Every time I see an American commercial for a bisphosphonate – Reclast (same as Zometa), Fosamax,Boniva, Prolia (same as XGEVA) – I think of Katz. His fingerprints are all over the auctioneer-style disclaimers dominating the second half of the ads. (Drug ads are prohibited in all but two nations, the United States and New Zealand.)
Most dentists now ask patients if they are taking bisphosphonates for any condition prior to treatment. Patients about to start a bisphosphonate regimen are advised to have a dental checkup. That’s Mike Katz.
Much has rightly been made of his suggestion to lower the dosage of steroids in the trials that were most responsible for gaining approval for lenalidomide (Revlimid), but less has been made about how this discovery has impacted virtually all disease treatment.
As I was looking for examples, I came across a Belgian paper with an overview of steroid use in oncology. And there it was, in the middle of the concluding section, all summed up in one sentence: “The lowest effective dose should be used and patients must be followed up regularly to assess benefits and risks associated with the therapy.” [Emphasis added.]
It had long been a tenet of medicine to treat most patients with as much of a drug that could be tolerated. And then go down. Today the quote highlighted above is the treatment paradigm. How little can be administered to get the optimal therapeutic effect? And then go up. Mike Katz is an important part of lineage behind the shift in thinking.
Less known, however, was the fact that he had already made a seminal impact on the history of advocacy. His mostly anonymous role nurtured ideas that would last far into the future. That’s a less understood legacy, but some remember.
Richard “Rick” Klausner, NCI Director from 1995-2001, appointed Katz inaugural chair of the NCI Director’s Consumer Liaison Group (DCLG, known today as the NCI Council of Research Advocates) in 1998, expanding the history of advocacy with new chapters. Klausner met Katz early in his NCI directorship, as he made a point to get to know patient advocates.
“You have to remember that in cancer,” Klausner said, “that was really a new phenomenon.” He remembered meeting advocates who were not only filled with “a mixture of anger and curiosity, but a lot of frustration. Science was going well and many of us doing science-based medicine were feeling very positive about where things were going. But it wasn’t translating for patients.”
Katz “stood out,” recalled Klausner, “in this very nascent advocacy world. He was just incredibly curious and the first one to say, not ‘How can you help me?,’ but ‘How can I help you?’”
“He turned desperation into a focused sense of urgency.”
- Former NCI Director Rick Klausner remembering Mike Katz
Klausner knew a good diplomat and operative when he saw one. “I was looking for bridges between the oncology community, the federal community, and the National Cancer Institute,” said Klausner. Katz fit the bill. “He understood friendship, partnership; we had conversations. I think we were able to share both the sense of optimism for the future and frustration for the present, it was really important to open up the National Cancer Institute to patients and patient advocates.”
Opening up needed a special touch, especially when “the tendency of the institution is to be insular.” According to Klausner, Katz “was the perfect person for it. He was passionate. You knew that Michael would hold your feet to the fire, but in the nicest way. He made it feel safe to open up, he was a really good sounding board.”
Among Klausner’s highest priorities was to “develop clinical and scientific strategic plans directed at each cancer,” something that had never been done. Klausner “became convinced incorporating patients and patient advocates made all of those processes better. We were all learning our way, including learning how to speak to each other, because we often spoke different languages.”
Included among Klausner’s recruits for DCLG were Ellen Stovall, founder of the National Coalition of Cancer Survivorship and a prominent Washington DC cancer pioneer and insider who passed away shortly after Katz, and Ellen Sigal, founder and still president of the Friends of Cancer Research. All, according to Klausner, “were really good at translating” between patients, scientists, and policymakers.
Today, patient advocates are a regular part of FDA committees, clinical trials cooperative groups, and pharmaceutical company advisory boards. Katz was one of the pioneers who made it normal.
“I think he’s an unsung hero,” Klausner said, reflecting on Katz more than two and a half decades later. “It was the time that advocacy went from the shadows to really becoming a critical part of everything we did. Michael was there at the very beginning.”
Like most effective political and intelligence operatives, Katz’s advocacy fingerprints are nearly impossible to find when looking at his most lasting achievements. He left no treatises or long paper trails. His public persona existed before the ubiquity of social media and cell phones, so there are no videos, viral or otherwise. Plus, he was beguilingly private.
Sadly, one reason many have forgotten is because many of the witnesses, his fellow patients, are no longer alive. Evidence like the bureaucratic notes of a 1999 DLCG meeting chaired by Katz will have to do. It was the first NCI meeting in which patient advocates, not medical professionals, prepared the agenda, quite a revolutionary concept at the time, as was the emphasis on patient-doctor communication. The notes are peppered with sentences beginning “Mr. Katz said…”
Katz raised an issue that had become central to his life ever since myeloma intruded: “training physicians…to better communicate with their patients.” Doctor-patient relationships were still quite authoritarian then. Patients were expected to follow advice and not ask too many questions. As we saw, the AIDs crisis of the 1980s did much to change that mindset.
The second related issue: “training patients…to navigate the health care system to obtain the information and support they need without relying entirely on their doctors.” Being diagnosed with a rare cancer in the early 1990s in the United States meant feeling isolated when trying to find information, which was a motivating factor for Brian Novis to create the International Myeloma Foundation (IMF). But it was Susie Novis who, when attending the first IMF meeting for experts in 1992, asked the question “Why aren’t they saying this to patients?” as she conceived the idea of patient education meetings featuring experts.
DCLG Chair Katz raised the single most difficult problem in patient education, the “length and complexity” of information about various cancers at the 1999 meeting. Making information accessible and appropriate was central to Katz’s philosophy. He noted “some patients prefer information to be presented briefly and simply while others want greater depth.”
Barriers such as “cultural sensitivity and relevance, which includes availability in languages other than English,” pose to access to care. Another “challenge will be to make the public aware of the NCI resources and make them capable and friendly enough to have the desired impact, as well as to get the word out to those who don't use current communications vehicles (telephone and Internet).”
Katz’s idea was to make NCI relevant to patients and caregivers, not as some distant ivory tower of expertise. He sought to improve “consumer feedback” because “perceptions of NCI among those in the outside world are very different from the perceptions of those inside NCI.” Experts needed to communicate their work to patients as much as patients needed to explain their needs and desires to experts.
Klausner sometimes wondered if Katz had a personal or professional life at all. “There was never a time I called that he wasn’t there.” As he and others were to learn years later, that was a common feeling everyone who knew Katz experienced.
While Katz had these official roles, he was vice chairman of the IMF’s board of directors. When his term at DCLG expired, he became more active as a patient representative with national clinical trials cooperative groups and the FDA drug approval process.
In 2004, he was interviewed by author Fran Hawthorne for Inside the FDA: The Business and Politics Behind the Drugs We Take and the Food We Eat, providing a new perspective. Hawthorne described how Katz, although he had been a patient for more that fourteen years, his only treatment up to then was off-label – prescribed for a purpose for which it was not approved – use of “thalidomide plus a steroid.”
The FDA was considering granting thalidomide’s approval for myeloma, which would make it more accessible to patients. Hawthorne speculated Celgene (as did other companies), which owned thalidomide and by then had supported the IMF financially with “patient education grants” – as Novartis did in the mid-1990s – might have advantages with Katz on an FDA advisory panel. As a volunteer advocate with no financial stake – he paid his own way to IMF events, as a patient who wanted to live, and a representative of the myeloma patient community, he explained, “People using it are very grateful. Because they’re not dying.”
Katz the myeloma patient “brusquely” dismissed the notion that financial ties between Celgene and the IMF would somehow overshadow the science and clinical trial data of thalidomide, “The notion that a person with an active disease or an incurable disease is going to approve a drug that’s a bad drug, just to help the company that’s making the donation, or block approval of a competing drug because he doesn’t want the company that funds his foundation to get injured – that is kind of ludicrous.”
Hawthorne also described meeting with a drug company in the late 1990s in which experts recommended three bone marrow biopsies for a clinical trial. “The company would run one test before the drug was taken and another afterwards, and then an independent party would do its own test to confirm the results.”
Katz reminded the panel that “biopsies are painful procedures in which a tool [he called] a ‘harpoon’ [was] inserted to suction out bone marrow cells from the pelvis.” Instead, “Katz suggested, if they could drop the company’s ‘after’ test and let the independent test fill that role.” Katz saved future patients a lot of unnecessary pain.
It was a repeating trend informed intimately by his personal experience as a patient and community advocate.
One more innovation was up Katz’s sleeve, seemingly more trivial than those described above, beginning with the 1999 annual ASH meeting. But it turned out to be another way to spread his influence, one repeated by every organization, clinic, and professional society to this day: experts on video.
Katz set up his camera on a table in corner of the IMF booth to let researchers and experts explain their studies and presentations. In the next fifteen years, Katz’s perch in the IMF booth expanded, becoming a regal court of sorts. Experts, young and old, would be invited by Katz. Over the years, experts would stop by for annual reunions.
When Katz first thought of videos, his initial goal was modest. He was less interested in educating patients and caregivers than he was in motivating them. Much of the information would be above the average patient’s head. But especially in the early years, Katz felt it was important to demonstrate to lay audiences that something, anything was going on.
Katz felt it was important to counter any feelings of pessimism, the overwhelming feeling many patients had that nothing in myeloma was changing for the better. In 1999, statistics had yet to show that stem cell transplants and use of thalidomide was slowly beginning to change myeloma survival curves on charts. In later years, as progress was becoming undeniable, Katz made sure to include lay-friendly overviews to provide greater context about new research.
There were no smartphones or an all-pervasive social media in the early 2000s. Katz foresaw the trend and made a personal investment in a state-of-the-art camera and equipment. What now fits in a pocket or small bag was then a densely packed, heavy suitcase. Katz became a familiar figure lugging it around the halls of ASH.
Today seemingly every organization is video-crazy. So are some doctors. ASH and other major meetings have hallways and spaces dedicated to video recording.
Katz saw possibilities. The more people got to know him, the more he was valued for his insights. When he was diagnosed with colon cancer in the early 2010s, he was an obvious choice to be a consumer (patient) reviewer for colorectal cancer research at the Congressionally Directed Medical Research Programs. Yet even when he devoted time to colorectal cancer issues late in his life, myeloma remained his primary interest outside of his family and synagogue.
Katz was patient-centric well before the term became a malleable cliché and marketing talking point. That’s a topic for another day.
Photo courtesy of Susie Katz.
Fantastic read, Greg! Really enjoyed learning about MIke's influence on myeloma treatment.
Nice historical bio of Mike Katz. One of the very patient-centric opportunities he (along with June Brazil) set up the original list serve, enabling patients to correspond with each other. Then in the early 2K’s he was instrumental in replacing the list serve with internet-based Smart Patients. Any of us who have been dx’d more than 20 years are forever grateful to Mike and his advocacy work.