"I've known for years that celebrity is a coin, and you want to spend it carefully," says Hollywood icon Michael J. Fox, who is Co-Founder of the Michael J. Fox Foundation for Parkinson's Research. It's not hard to imagine that the approximately 1 million Americans who live with Parkinson's are grateful that he chose to use his “coin” to create awareness, revamp research processes, and search for effective treatments.
Indeed, Fox illustrates the unique role philanthropists can play in injecting much-needed dollars and innovation into the field of medical research. Currently, the bulk of funding comes from the drug industry and the government, funding sources that each arouse concerns: the drug industry for conflict of interest and other issues, and government funding for the consequences of sequestration cuts. And although philanthropists provide only a small percentage of medical research funding, their ability to take risks, tackle little-known diseases, and create their own processes may well prove crucial to the future of medical research.
A snapshot of medical research funding
In 2007 the pharmaceutical, biotechnology, and medical device firms continued to be the largest contributor to biomedical research, contributing 58% of all research funding. The National Institutes of Health was the second-largest, at 27%. State and local governments accounted for 5% of funding, as did non-NIH federal sources. Private not-for-profit support followed at 4%.
While the NIH spent $28 billion, and other federal agencies spent $5 billion on biomedical research, the pharamaceutical, biotech, and medical device firms spent a collective $60 billion. State and local governments spent $5 billion, and not-for-profits spent $4 billion.
Source: “Funding of US Biomedical Research, 2003-2008,” JAMA: The Journal of the American Medical Association, 2010.
Raising awareness for little-known conditions
One powerful contribution that philanthropists can make to medical research is in raising awareness. For example, in the early 1990s, Co-Founder of The Home Depot Bernie Marcus began the Marcus Autism Center after witnessing the challenges facing an employee who had an autistic child. “When you think about autism today, everybody knows about it,” says Marcus. “You take the clock and go back 10 years, nobody knew about it.” Indeed, in his research Marcus learned that although autism in children was common—one child out of every 88 had it—research was negligible.
In order to understand autism and treat children with the condition, Marcus gathered together fellow philanthropists and top medical researchers. The need for the center's work was tremendous, particularly since caring for a child with autism can be extremely expensive, and the center was doing good work. But that need outstripped resources. "We just got inundated," says Marcus. "I was carrying this by myself—the state didn’t help us, the federal government didn’t help us," he says. Continuing on in that same way was financially unsustainable. "One day I realized that the reason it wasn’t working was because people didn’t understand autism,” says Marcus. He made it his mission to make sure people did. For example, a Philanthropy magazine article notes that he brought legislators and other public officials to the center. In addition, Marcus also recruited philanthropists Bob and Suzanne Wright to start Autism Speaks. The science and advocacy organization, launched with $25 million from Marcus, funds research into causes, prevention, and treatments. It also funds research into finding a cure, as well as other work. On the awareness front, in 2005, Autism Speaks' first year in operation, the organization create a "media blitz" to raise awareness for the condition. “Because of Autism Speaks," says Marcus, "more money is going into autism because it’s become an epidemic in people’s eyes.”
Marcus is not the only philanthropist who raised the profile of a little-known health issue. Awareness around Parkinson's disease can largely be credited to Michael J. Fox, who was diagnosed with the disease in 1991, but kept his condition private at first. As time passed, producing and acting on the series Spin City and hiding his condition became increasingly difficult. "It got problematic," he recounts, "so I told people about it." He was surprised by the response. "It was a big story," he says. "Then after a couple of days the story switched from being about me to being about Parkinson's." Fox quickly recognized that what had been a painful secret—and continues to be a personal health battle—had opened up a new path to be of service. "This is really...an opportunity to effect a change in the lives of a lot of people," he recalls thinking.
Mike Milken, co-founder of the Milken Family Foundation, chairman of the Milken Institute, and founder of the Prostate Cancer Foundation (PCF) and FasterCures, is another philanthropist who has done much in the field of medical philanthropy, so much so that in 2004 Fortune magazine dubbed him "The Man Who Changed Medicine." Although he had long been involved in medical philanthropy, after his prostate cancer diagnosis in 1993, Milken's involvement ramped up. He was instrumental in lifting the issue of prostate cancer out from obscurity and into the public spotlight, and he did so through a number of creative and decisive actions. Just one example: Milken heard that a promising researcher was searching for a gene related to prostate cancer, but he lacked a sufficient number of people to study, according to the Fortune article. Finding families who were willing to be studied could be difficult and time-consuming, so Milken brought the need to a public arena. He made some calls, and the researchers appeared on the Larry King Live show in an episode devoted to prostate cancer. When the show asked for volunteers, 3,000 people called in, and in three weeks the researchers had a sufficient number of qualified families. Milken is also credited as being instrumental to a landmark 1998 march in Washington, D.C., which targeted raising cancer’s political profile. "The March…Coming Together to Conquer Cancer" brought together 150,000 people representing more than 600 cancer organizations, according to Celebration of Science, an initiative of Milken’s FasterCures and the Milken Institute.
Accelerating the pace of research
For many philanthropists, raising awareness is key, but the work does not stop there. Indeed, awareness precedes or is used in conjunction with something vital to those who engage in medical philanthropy: Injecting much-needed responsiveness and innovation into medical research processes. Herb Sandler and his late wife, Marion Sandler, did just that. Sandler co-founded and ran Golden West Financial Corporation for 43 years, along with Marion. It was Marion's own struggle with asthma that originally put the disease on the Sandlers’ philanthropic radar, but in short order they recognized it as a pervasive and critical health issue. Despite asthma’s prevalence—for example, the disease causes 3,500 deaths in the United States each year—the couple found that the field of asthma research and treatment was stagnant. They believed that the problem could largely be blamed on the fact that the same type of people continually worked on asthma research without the contributions of specialists and experts in other fields. To achieve "cross-pollination" and attract innovative researchers and their most promising ideas, the Sandlers offered large grants, created a short grant application, and instituted a fast approval process. Herb points out that this was in stark contrast to the typically thick applications that researchers had to complete for most grants and the long approval waiting periods that went with them. The response was overwhelming. “We were turning down Nobel laureates,” says Herb. That kick-start and subsequent work has proved key in asthma research, Herb believes. Since the Sandlers began focusing on asthma in the late 1990s, breakthroughs in research and treatment followed. For example, the American Asthma Foundation, established with support from the Sandler Foundation, has had five drugs in clinical trials as a result of its research program.
The Sandlers weren't the only philanthropists to inject innovation into a stagnant area of medical research. Milken has done much to innovate the field, beginning with prostate cancer research. Although prostate cancer is the most common cancer in men other than skin cancer, only a handful of grants went to studying prostate cancer when Milken received his diagnosis in 1993. Moreover, researchers who opted to study it in the 1980s and 1990s were essentially committing career suicide. Part of the problem was that in many men the disease progressed very slowly, and subsequently that was the pace of research as well: Slow. There were other problems as well. As is the case even today, grant applications, which could run hundreds of pages, were formidable and time-consuming—simply gathering data and research to apply could take a year or more. In addition, the review process was long; researchers might have to wait another year or so for that stage, then another year to be allocated money. It’s a pace that strongly hinders responsiveness to emerging research and innovative breakthroughs. In addition, the medical research community routinely rejected considering the ideas of up-and-coming researchers in favor of more traditional ideas from more established researchers.
Milken’s response? He had the Prostate Cancer Foundation put out a call for researchers' most innovative ideas. "We initiated programs where you could submit a five-page application and we would let you know whether you’re going to be funded in 60 days or less," he says. "It attracted the best and brightest to the field." That kind of leadership and risk taking typifies the special role philanthropists can play. "There is no individual, there is no foundation that can match government or industry commitments in medical research," says Milken. For this reason, he points out that it's crucial for philanthropists to lead the way by doing "venture philanthropy" and shining a light on an innovative path that would not be tried otherwise. Milken's forward-thinking leadership has led to PCF advances in important new drugs and research advances in areas such as genetics, biomarkers, nutrition, and androgen receptors.
Milken also set an example by focusing funding on treatment-driven research, rather than on basic science, and on requiring researchers to share findings, even in advance of publication. "The people we fund have to share," he told them in no uncertain terms. Although many researchers at first balked at such a request, "Within six months, every single person that told us they could not share, shared." Indeed Milken's FasterCures, a center of the Milken Institute and an action tank focused on removing barriers to medical progress, has as one of its central tenets the promotion of collaborative research, led with the patient in mind, and tackles the entire spectrum of medical research.
Making connections and looking ahead
Today, Fox is back in the entertainment news for the debut of his new TV series, The Michael J. Fox Show. Yet his beloved Hollywood icon status has, for many years, taken a backseat to the work he has done with the Michael J. Fox Foundation. Co-founded with Deborah W. Brooks, the foundation is leading the way in Parkinson's research and drug development. The Michael J. Fox Foundation seeks to change the medical research status quo system where good ideas disappear in bureaucratic and rigid processes. It does so with a focus on quickly identifying promising research and treatment and accelerating the path of promising treatments. To that end, the foundation is backing an early stage clinical trial of a first-of-its-kind vaccine approach to treating Parkinson's disease, and it works with big pharmaceutical companies to speed advances in medicine. The foundation also connects volunteers to clinical trials through its Web-based tool the Fox Trial Finder, which is a crucial—and challenging—component of medical research. According to the foundation's site, "across all diseases, 80 percent of clinical trials finish late due to difficulties enrolling participants, and nearly one-third of trials fail to recruit a single subject and cannot ever begin." To date, the foundation has succeeded in attracting 22,235 volunteers. In addition, by the end of 2011 the Michael J. Fox Foundation "had funded more than $57 million in groundbreaking research, and its team of neuroscientists and business strategists had reviewed over 900 grant applications, bringing its portfolio up to 400 active grants.
Those results are impressive, but Fox considers achievement on a more personal level as well and takes his role personally. "It's really important that I'm present for [people in the community] when they come up to me and say 'hello,' and I can be reassuring and inspirational, hopefully." And pointing to a Team Fox marathon team, which raises funds for the foundation and includes members with Parkinson's, Fox says, "The fact that those people, as inspiring and powerful and motivated as they are, look to us as their avenue to a cure or to better treatments, really steps up our sense of responsibility and our pride to be part of that community."