Generating public concern about less widely known diseases—and speeding biomedical research to find a cure for them—is an important niche for private philanthropies in an era of shrinking government budgets. Sometimes, the catalysts for funding are smaller, single-issue philanthropies like the Dubai-based Legatum Foundation, which, since 2006, has focused on the problem of neglected tropical diseases (NTDs) in Africa. Legatum’s initial success in just two countries, Rwanda and Burundi, with just $9 million in start-up funding, eventually drew the attention of the Bill & Melinda Gates Foundation (see our earlier report) and eventually led to the creation of the Global Network for Neglected Tropical Diseases, an organization that advocates for increased funding for NTDs. It wasn’t long before governments began making their own commitments to tackle NTDs throughout the African continent.
But not all niche funding catalysts are small—or unknown. Consider the case of the Leona M. and Harry B. Helmsley Charitable Trust. Co-founder Leona was already famous, especially to New Yorkers, as an eccentric socialite who once expressed the belief that wealthy people shouldn’t have to pay taxes (“That’s for little people,” she opined). After her conviction for tax evasion in 1992, few expected the billionaire hotelier to devote her remaining years focusing on the needs of human beings less fortunate than herself. In fact, prior to her death, it was widely rumored that she was planning to leave her entire estate to the charitable care of neglected and abused pets. It didn’t turn out that way. Thanks to ambiguities in the “mission statements” she issued prior to her death, and to the maneuverings of her heirs, her enormous charity never got around to supporting pets. Instead, it has carved out an important niche seeking a cure for type 1 diabetes (widely known as T1D). The Helmsley Charitable Trust has other program goals, but none quite as important as this one. And the foundation is no small shop. In 2016, it reported assets of $5.5 billion, up from $3.4 billion in 2010. Its massive funding (about $265 million in grants in 2016), especially when coupled with investments from like-minded donors, provides enormous leverage for change.
In fact, until Helmsley’s intervention a decade ago, T1D was something of a stepchild in today’s healthcare market. Nearly 95 percent of all diabetes in the U.S. today is type 2, caused largely by poor diet and obesity. While T1D also results from the body’s inability to control excess sugar, it is not a lifestyle disease, but an autoimmune disorder. T1D sufferers—about 1.5 million currently—are born with a deficiency of insulin needed to transform glucose into energy; instead, sugar enters the blood and leads to chronic fatigue, excessive thirst, frequent urination and other symptoms. Unlike the 27 million T2D sufferers, typically diagnosed in adulthood, T1D victims are diagnosed as children and have many more years of painful disease management ahead of them.
As with many philanthropic concerns, the Helmsley connection to T1D was intensely personal at first. The six-year-old daughter of David Panzirer, a Helmsley grandson, was diagnosed with the illness at age six, just as Panzirer was joining the board as a trustee in 2007. Since then, the foundation has taken to the T1D issue with a vengeance. Its first major grant in 2009 created a clinical research network with over 70 participating clinics supported by a longitudinal clinic registry of medical records for more than 26,000 T1D patients and a “bio-repository” that stores and processes biological data for scientific analysis.
The grant also established an online patient and caregiver support community that also provides volunteers for clinical research trials. That early grant put the T1D issue squarely on the map. But with the help of new and more sophisticated IT partners and other co-donors, Helmsley’s been building up its T1D networking infrastructure while accelerating the pace of research, refining treatment methods, and introducing innovative medical devices. The “bionic pancreas,” introduced in 2013, enables continuous automated glucose monitoring and insulin and glucagon dosing, removing the need for constant and sometimes life-threatening dosing decisions and greatly easing the burden of managing T1D.
Earlier this month, Helmsley introduced yet another innovation: a machine-learning system that provides predictive analytics to proactively identify and manage at-risk patients at the point of treatment. Helmsley turned to a new technology provider, Cambridge, Massachusetts-based Cyft, to develop the new system, which will be deployed in two world-renowned clinics with large numbers of T1D patients, Children’s Mercy Hospital in Kansas City and Joslin Diabetes Center.
As large and as consequential as Helmsley’s philanthropic contributions can be, the foundation still sees itself more as a charity catalyst. In recent years, it has backstopped more than 100 senior research scientists at major medical institutions working on a cure for Crohn’s disease. It has also become part of the END Fund, a collaborative private philanthropic initiative working to control and eliminate neglected tropical diseases, inspired by the pioneering work of Legatum in Africa. And some of its latest T1D funding has been routed through the Critical Path Institute, which just launched the Type 1 Diabetes (T1D) Consortium with additional support from Janssen Research & Development, LLC; JDRF International; and Sanofi.
At a recent conference sponsored by the Milken Institute, trustee Panzirer noted that Big Pharma doesn’t have the same strong business incentive to invest in T1D that it has in the case of T2D. Funders need to combine “a high degree of risk taking” with “due diligence”—and just “hope for the best,” he added. “Philanthropies have an obligation to think differently, to think in a long-term way and very far out on the risk curve. Don’t be afraid to fail. If you are not failing 90 percent of the time, you are not taking enough risk. If curing a disease was easy, it would be done already.”
Panzirer’s background in commercial real estate certainly hasn’t hurt. “We spend a lot of time surveying the landscape to identify organizations that take a business-oriented approach, and not just disease-specific organizations. We also try to understand what industry is doing, what they want, what they’re funding, and more importantly, what they’re not funding—and why—and see if there is a role for us to ‘de-risk’ it, to try to get them to play in our space.”
Thanks to eight years of dedicated philanthropy that has transformed the way public health specialists treat T1D, the Helmsley name, once a target of opprobrium, has become a premier brand.