Creating Community
One vital part of myeloma history did not exist in the late 1980s/early 1990s, a “community.” Certainly not a patient community. There were few of them and they didn’t tend to live long. The first meeting of worldwide myeloma experts in 1987 had no more than 70 attendees and everyone knew each other. More about that in the future.
Seen from today’s perspective, there is no question of the existence of a tangible myeloma community with many facets today. It has many sides, many interests, but it is palpable.
It’s difficult to recall today that back then, few, if any resources for patients—never mind caregivers—existed. Today, three patient organizations specifically focus on myeloma. Another blood cancer organization includes myeloma as part of its constituency.
The internet has been integral. Clinical trial finders focused on myeloma like SparkCures, reputable clinic websites, and a variety of other patient-service organizations like support groups—and even a Substack on myeloma history—now pose a danger of too much information. But there is still bad information out there and sometimes even too much good information to being able to process and make sense of it. But it had a beginning, and it’s important to remember why.
Trying to recall the feeling of being in a physician’s office first diagnosed with a disease like myeloma often comes in one of two types: not remembering a thing and remembering every second. Imagine what that memory might have been in the late 1980s…something Brian Novis understood very well.
It started in 1988 with a routine blood test for a life insurance-related physical exam in anticipation of his marriage to his fiancé, Susie. His tests came back with some numbers needing further investigation, which felt odd because he was a healthy thirty-three-year-old.
Novis, a native South African establishing a career as a corporate headhunter in Los Angeles, was familiar with a world of deals, finding solutions for people, connecting them to the right situation. Myeloma had never been part of his vocabulary, just like everyone he knew. (If you’re too young to remember what it was like back then, then ask an old geezer, one like me. The very few who knew anything about myeloma mostly knew that it was bad. Although no one knew it yet, the days of sending self-addressed, stamped envelopes to receive information were coming to an end. But not quite yet.)
There was nowhere Novis could go for information except for what most people did then: go to the library. It was the first step many like him took then in a desperate, deliberate, search for hope – perhaps a doctor who could give him better odds than those predicted for him. What he found was not encouraging.
Novis became his own headhunter. First up: identify the players. That was somewhat easy because they were few, mostly hard because they tended to be far between. He and Susie consulted with Robert Kyle at Mayo, Bart Barlogie in Little Rock, Ken Anderson in Boston, and Tucson, where Sidney Salmon and William Dalton were establishing a strong reputation in myeloma at the University of Arizona.
They were drawn to London’s Royal Marsden Hospital, where a Scottish doctor, Brian Durie, was a rising star in myeloma. Durie was on the forefront of a new idea in medicine: a patient-centric approach. This was a big deal at a time when it was still common for older physicians around the world not to speak honestly about serious diseases like cancer with patients themselves. In doing so, they unknowingly spread a sense of fatalism among their patients, peers, and in public consciousness everywhere.
As Susie told it, Novis and Durie kept talking as she took a bathroom break, only to return to find out she had just become one of the three founding members, along with the two Brians, of a dream they called the International Myeloma Foundation (IMF).
When the IMF was created in 1990, only very few people—scientists, technicians, and policy makers included—had any idea what the internet was; and they weren’t sure if it might one day be a novelty or necessity. Those thoughts weren’t on Novis’s mind when he set up his IBM Selectric typewriter on a card table in his garage, the first home of the IMF. Sitting down in his lawn chair, Novis’s primary goal was to increase the number and quality of myeloma specialists and experts, one correspondence at a time. He was getting to know them, and he wanted them to get to know each other better and exchange ideas as quickly as possible. That hope existed for patients like him.
The IMF, aka Brian Novis, created material for newly diagnosed patients so that they wouldn’t have to hoof it to the library like he did. They weren’t pretty or slick. Photocopies were usually the best that could be done, but it was something. Susie worked for Norcom Telecom, was caregiver Novis, and helped when she could. By August 1992, they made connections and raised needed funds to host an international meeting of experts at the Arizona Biltmore Hotel in Phoenix. More than fifty were in attendance for this first ever IMF event, including Robert Kyle, Ken Anderson, and Durie.
Novis was not there. Myeloma was ravaging his body relentlessly. He would be dead a few weeks later, four years after his diagnosis. Just like Sarah Newbury 148 years earlier.
Susie became a reluctant president of the IMF after Novis’s death. She didn’t prepare for this. How could anyone? Or so she thought. Her personality differed from Novis’s. She prioritized people and relationships over zero sum deal making.
Prior to meeting Novis, Susie’s life took her from Hartford, Connecticut to New York to Los Angeles. She loved the weather and glamour of Hollywood. But rather than establishing a life together with Novis when myeloma came into her life, she had to figure out a job and mission that had no template.
As Susie tried to get up to speed on myeloma, she became closer to Durie. So close that they became more than colleagues and married in the mid-1990s.
Durie moved to Cedars-Sinai Hospital in Los Angeles after spending a short time at Mayo working with Robert Kyle. Later, working with Sydney Salmon at the University of Arizona, he was key to devising the first ever staging system for myeloma, the Durie-Salmon scale.
It helped physicians classify patients and became essential in making informed treatment decisions. Now he wanted to do the same for patients as chair of the IMF.
Although it’s difficult for anyone under the age of forty to fully grasp today, in its early days the internet was a bit exotic, still considered it to be a novel fad by many, especially when getting a home computer for the first time often meant taking out a loan. In 1989, only a very few could even envision what a website was, much less that a newfangled idea called electronic mail would replace most letters and postcards.
One of those very few, Michael Katz, worked in the New York office of one of the largest consulting firms in the world, Booz Allen. In coming years, he would advise governments and corporations throughout the globe on how to prepare for the coming revolution, explaining to them why they needed to buy domain names ending in .com, .net, or .edu and how it would be critical to their work. He designed websites before most of them understood why they would need them.
When Katz was diagnosed with myeloma at 37, he had three boys aged 4 to 9, and wasn’t sure what to do next. Being diagnosed with cancer then still carried a social and professional stigma – which has still not completely disappeared.
Besides his wife, also named Susie, and his boss, he told no one. Not his mother or the rest of his family, not the Orthodox Jewish congregation he belonged to on Long Island, and certainly not any of his clients or coworkers.
Over time, he would become an unlikely prophet and patron saint of a budding myeloma patient community. He just didn’t know it yet. First, however, he had to make sense of his disease and provide for a future for his family; a future he was sure he would never see based on his reading of myeloma survival statistics.
In 1993, his doctor attended the IMF meeting in Phoenix. Katz decided to visit on his next business trip to Los Angeles. He had already outlived the mortality statistics and started to think he might be on borrowed time. When Katz arrived in Los Angeles, he was shocked that the “foundation” offices he expected to see were modified bedrooms in a residence and overwhelmed that such a place of comfort and hope existed.
He recalled seeing a hand-written sign in the cubicle of an early IMF staffer, who mostly answered phones for incoming calls from patients on a toll-free line: “Never put a stage three patient on hold!” It was the kind dark humor that connected with Katz.
He spent a couple of days with Susie and Durie and, for the first time since his diagnosis, he found people who understood what he faced as a patient. Moreover, they wanted to do something significant about myeloma, to be proactive and assertive. It was the beginning of a deep friendship.
The sum of the parts of Susie’s natural, outgoing personality, Durie’s expertise and professional standing, and Katz’s unique insight about the nascent digital age would provide a solid foundation that would make the IMF matter, nationally and internationally. Yet few outside of a very small circle of friends, family, and colleagues would know Katz had anything to do with it.
In what little free time Katz thought he had available, he started to put together a website for the IMF. Susie—and most people at the time—still didn’t think it was as important as mailings to fulfill information requests or answering phone on their new hotline.
Between mailings, the hotline, Katz’s ideas for a website, creating patient education materials, as well as meetings for patients and professionals, more enthusiasm soon outgrew their means. Ideas, inspiration, and intentions only go so far.
Lots of things would have to fall into place. Fortuitously, after more than a century of little progress, by the mid-to-late 1990s, changes on a number of fronts began to take place.
Oddly, clogging sewer pipes in Basel, Switzerland would have more than a little to do with shaping a worldwide myeloma community.
Photo: Western Salsify seedhead