The unlikely hero behind the new era of cancer therapy.
Alliance for Cancer Gene Therapy
Today, gene- and cell-based therapy holds tremendous promise for addressing some of the most intractable cancers. These therapies have put patients – even those who have exhausted all other options — into remission by harnessing their immune systems to identify and kill cancer cells while saving healthy cells. But 20 years ago, few people predicted this extraordinary progress in using cells and genes as medicine. The concept of re-engineering the body to recognize and attack cancer itself was too futuristic, too risky, too controversial.
Researchers who persevered in this experimental science were often scoffed at by their academic colleagues. And then the backlash from the death of a young patient during an early clinical trial delivered a near-fatal blow to the field. A torrent of negative media coverage followed, and the little funding there was dried up.
The story of how the field survived and went on to join the front lines of cancer therapy is made up of many chapters, with a large and noteworthy cast. But a little-known and crucial chapter centers around one of cancer gene therapy’s biggest champions, Edward Netter, and his wife, Barbara.
A calculated risk-taker.
At first glance, Edward is an unlikely candidate to support an obscure area of cancer research that wasn’t on many people’s radars, including his own. Edward was an actuary-turned-businessman with no formal medical or scientific education. His field was insurance – an industry built on risk aversion, not risk taking. Still, Edward had the foresight to invest in a fringe area of science that the National Institutes of Health had deemed too risky to fund.
Part of the explanation is simple. Insurance is all about predicting future trajectories, and Edward never expected the future to be anything like the present. “He always had extremely good judgement about what to invest in,” says Roy Thung, CEO and president of Independence Holding Company, the NYSE public company that includes the insurance entities initially headed by Edward. “He had the innate insight to study a company, or an idea, and determine if it was going to work.”
Seeing the world differently.
On the outside, Edward is often described as a quiet, analytic and deliberate man. On the inside, his mind could spin through concepts at a meteoric rate, and it showed when he was enthusiastic about an idea.
Steve Lapin, now CEO of Geneve Holdings, Inc., the parent company that Edward created, joined the group in 1980 as a young in-house transactional lawyer when Geneve was in its relative infancy. “I’d never met anyone who came close to Edward’s intellectual capacity and curiosity,” he says. “And while most people were stuck on one of his ideas at ‘C’, he’d already be talking ‘Z.’” The more challenging the business concept was, the giddier Edward became. “He delighted in his complex business creations,” says Steve. “And when I’d sometimes profess to him, ‘No, Edward, that just won’t work,’ it usually worked just right.”
Edward didn’t abide by the notion that insurance companies should be slow-moving and hesitant to change. As he grew his business, he tried the historically untried. In reimagining the traditional insurance acquisition business model, he showed how insurance companies could free up untapped assets in order to unlock previously hidden value, making acquisitions less risky. He later forecasted the modern-day financial services holding company model, in which different kinds of investment products, like mutual funds, insurance and banking come together under one powerhouse entity.
These innovations set the stage for an even bolder move into the field of cancer therapy.
A lecture, a lunch date, a launch: The Alliance for Cancer Gene Therapy is born.
Edward rarely encountered a subject in which he wasn’t intensely interested, and he was often drawn to disciplines far from his own in order to learn all he could. In 2001, this innate curiosity brought him to a lecture on cancer gene therapy by Dr. Savio Woo, at Mount Sinai Hospital in New York City, who would become his kindred spirit in challenging the traditional approach to cancer treatment.
Edward listened to Dr. Woo describe cellular and cancer biology and talk about replacing longstanding approaches to defeating cancer. The concepts resonated with Edward; it was all about taking things apart and looking at them in creative new ways, a methodology at which Edward was masterful. When the lecture ended, Edward immediately asked Dr. Woo to lunch. Around the same time, Barbara, then a practicing psychotherapist, attended another seminar exploring the boundaries of cancer research in Boston. She returned equally inspired to rally behind the small cancer gene therapy scientific community.
These lectures took place at an important, albeit extremely sad, time in Edward’s and Barbara’s life. Just a year before, their daughter-in-law had passed away from breast cancer after 11 years struggling with the disease and its harsh treatments. “I remember Edward saying to me, ‘Chemotherapy and radiation didn’t work so we should find something that does,’” says Barbara. “He was determined to do something about it.”
In Geneve’s Stamford, CT, headquarters, Steve Lapin’s desk is in an office right across from the front door. “Just about every morning I knew the door would open and Edward would make a bee-line to me,” Steve says. “And on those days, there would be a flow of new ideas from Edward’s remarkable brain, some of them staggering in complexity, but most of them elegant in simplicity.”
Over the many years of working together with Edward, Steve had become used to having those mornings begin this way. And on the day after Dr. Woo’s lecture, Edward swept through the door and charged over to Steve’s desk. “I had to brace myself… What now?” Steve remembers. “Before he even sat down, Edward said, ‘I want to create a cancer charity based on gene therapy.’ We’d never organized a charitable foundation before, and at the time, just about the only news about gene therapy for cancer was bad news. This didn’t dissuade Edward one bit.”
With Barbara as an equally enthusiastic partner, Edward soon created Alliance for Cancer Gene Therapy . Dr. Woo served as the founding scientist. The Netters assembled a Board whose members were also 100% vested in the concept of gene therapy, and with Dr. Woo, they set out to gather “the best minds” to create a powerhouse Scientific Advisory Council. Significant funds were provided directly by Edward and Barbara, and separately raised by them, to help give the then-unpopular research another chance.
A pillar of support.
For much of his life, Edward donated his time, expertise and resources to philanthropic causes, seeking ways to create the biggest impact for the biggest number of people, often in the realms of science and education. When it came to Alliance for Cancer Gene Therapy, Edward knew exactly what he wanted to do, how to do it and why. “In his mind, Edward saw how gene therapy would play out more clearly than anyone back then,” says John Lahey, PhD, the recently retired long-time President of Quinnipiac University.
Edward invited John to serve on the Board and that of Independence Holding Company so John could take business principles and apply them to higher education at Quinnipiac. “He was an expert in math, finance, tax and accounting and could figure them all out in a way I’d never seen,” says John. “He was also genius in investments and reviewed our endowment and gave me advice on investing.”
When John was considering adding a medical school to the university, Edward and Barbara stepped up to support it, giving the largest donation in the university’s history. The Netters chose to name the school for Edward’s cousin Frank, who’d been a preeminent medical illustrator, and someone Edward and Barbara so admired. “It was really striking to me that they didn’t want it named after themselves,” says John. He suspects that Edward also had a business reason in mind. “I think he knew that if we put Frank Netter’s name on the school, it would give us instant credibility, and he was absolutely right.”
Edward and Barbara were also committed supporters of Ira Harkavy’s work at the University of Pennsylvania creating university-community partnerships and university-assisted community school programs. Edward shared Ira’s great passion for improving community schools and believed in Ira’s reform model. “He was a partner from the day he saw our work and encouraged me to think big,” says Ira.
The first thing Edward suggested was the possibility for much broader applications. “He was enthusiastically optimistic about our potential and he’d call twice a week, asking about a new approach, sharing an article in the Times or to think of new directions to take the work in order to have a tremendous impact around the world,” says Ira. Step by step, Edward and Barbara funded different aspects of the program so it could demonstrate success and become an attractive model to replicate.
Ira remembers Edward bubbling with excitement when he started the Alliance. “He just had extraordinary energy and passion, for education, for gene therapy – it was all infectious,” Ira says. “He’d say to me that philanthropy should have an impact, and he liked to pick areas he believed could be transformative.”
A man of the people.
Most people who knew Edward describe him as thoroughly down-to-earth. “I’ve been around a lot of wealthy, brilliant people who want you to know it, but he was just the opposite,” says John Lahey. “He had genius and vision and wasn’t looking for a pat on the back.”
Always equipped with a joke, Edward made a similar impression on everyone he met. “You’d think that a man of his stature would be snobby, but he was incredibly humble,” says Roy Thung. “It didn’t matter if you were a mailman or a Wall Street banker, he’d stop and spend time with you.”
Edward was someone who people turned to when it came to assisting others to reach their goals. “He always wanted to help people, and he was just that kind of a person,” says his daughter, Vicki Netter Fitzgerald.
Michael Gregory was 26 when he met Edward and was looking to build his own healthcare biotech company. “In me, I think he saw an energetic younger version of himself who needed a solution – and there’s never been a problem Edward didn’t have five solutions for.”
During their first meeting, they connected over a shared excitement about the innovation happening in healthcare biotech and they mapped out an outline for what would be a beautiful partnership; Edward gave Michael operational support and capital to grow his business and a desk at Geneve. Edward worked with him every day on it. He was the kind of mentor who took the time to notice others’ accomplishments and character, swinging by to give Michael a pat on the shoulder and tell him that he was a good person.
Championing the Alliance — anytime, anywhere.
Once Edward took up the cancer gene therapy mantle, he didn’t let go. “He’d tell the story over and over again,” says John Lahey. “He would explain to anyone who’d listen that unlike the sledgehammer of chemotherapy and radiation, this was a tiny, sophisticated instrument.”
Edward voraciously read medical journals on, and trumpeted, the emerging science to everyone with a mix of child-like excitement and practicality. He had a way of spending time with anyone who came into his sphere and getting to know what interested them – and in turn educating them on the massive potential he saw in cancer gene therapy.
“He was constantly educating people about why it made sense,” says Michael Gregory. Edward often brought scientists to the Geneve headquarters. “It became like his intellectual salon,” says Michael, who remembers the incongruous scene of Edward shepherding the firm’s accounting and administrative staff into the conference room to listen to scientists discuss topics like mutated genes and molecular targets. For some visitors, he’d play video clips of scientists describing their discoveries.
Outside of the office, Edward and Barbara became a cancer gene therapy PR show. At dinner parties, social events and lunches, they’d describe the possibilities they believed lay in store and promote researchers’ work to attract likeminded philanthropists to the Alliance.
A catalyst for change.
Many of the young scientists that Alliance for Cancer Gene Therapy supported have gone on to become among the most respected scientific minds in the country. The most famous is the Alliance-funded immunologist Dr. Carl H. June at the University of Pennsylvania’s Abramson Cancer Center, whose pioneering work in gene therapy led to the first clinical trial breakthrough and FDA approval. A young girl with terminal leukemia was saved when a trial using Dr. June’s CAR T-cell therapy technique sent it into complete remission.
Today, hundreds if not thousands, of blood cancer patients are benefiting from the Alliance for Cancer Gene Therapy-funded work of Dr. June’s science. “Edward and Barbara’s support of our Abramson Cancer Center through their personal philanthropy and the Alliance continues to enhance immunotherapy research and transform patients’ lives,” says Amy Gutmann, president of University of Pennsylvania. Amy speaks of forever valuing Edwards’s friendship, his inquisitive mind, engaging conversation and being one of a kind, and someone whose memory she will always hold dear.
Unfortunately, Edward wasn’t alive to witness the fruits of his generosity and to see that the treatment approach he believed in so strongly was successful. Just months before the announcement of Dr. June’s success, Edward passed away from pancreatic cancer, in 2011.
Edward and Barbara were always very much a team. The couple enjoyed a long, interesting and productive life together, always reaching for the carrot, surrounded by innovative minds often conferring with one another as to the best way to approach a process or project. When Edward died, Barbara took the reins and redoubled her support of the organization such that 100% of donations can go directly to research and programs. “We’re in a new era of cancer treatment, and I believe that we’re at another tipping point in scientific discovery,” says Barbara.
In the past few years, the pace of approvals has accelerated quickly. Michael Gregory has been investing in the cancer gene therapy space for his entire career and has a unique vantage point. He recently met with Scott Gottlieb, MD, former FDA commissioner, who told him that the agency was expecting about 20-22 cell and gene therapy approvals per year over the next five years. “Innovation in scientific discovery is advancing so quickly across so many disease types with so many modalities,” says Michael. “Gene therapy, cell therapy and gene editing are right in the middle of that innovation wave.”
Edward is among the ranks of those who spurred that innovation, with Alliance for Cancer Gene Therapy’s early grants and fervent support enabling new experiments and post-doctoral work and attracting numerous scientists to the field. Edward was a complex visionary, but for him the formula for success was simple: Listen to people; look at problems in new ways; and be generous with your knowledge, time and money.