Autoimmune diseases like type 1 diabetes are on the rise—and David Panzirer has dedicated his life to finding out why. Panzirer, a trustee at the Helmsley Charitable Trust, the largest private funder of type 1 diabetes-related research, talks about his philanthropic journey.
My oldest daughter, Morgan, was diagnosed with type 1 diabetes in 2007. Five months later, my grandmother, Leona Helmsley, died, leaving me one of the trustees of the Helmsley Charitable Trust. These two events happening in such close succession sent a less than subtle message about what I should be doing with my life.
Early on, a friend suggested contacting Lee Iacocca. Lee’s wife, Mary, had died of type 1 diabetes in 1983. A year later, he founded The Iacocca Family Foundation, which funds diabetes research. I wrote to Lee and the letter landed on the desk of Dana Ball, who was then the executive director of the foundation. Dana and I spent a week running around California, where I got my feet wet learning how to have an effect on a disease through targeted, laser-focused philanthropy. We spent a lot of time with experts at the Cystic Fibrosis Foundation and the Michael J. Fox Foundation, two charitable organizations that have had a significant impact on their respective diseases (cystic fibrosis and Parkinson’s disease). And it’s a journey that has not stopped in the nine years since.
At Helmsley, our type 1 diabetes grant making focuses on two pillars: 1) improving outcomes for those living with the disease today; and 2) primary prevention—to stop the disease before it starts. I realized we’re not curing this disease any time soon and what we need are better management tools to ease the burden of managing this relentless disease and improving the quality of life for those suffering from it.
If you want your philanthropy to make an impact, figure out what you’re trying to achieve and work your way backwards from there to figure out how to reach that goal. If you want to get a drug or device or a therapy to market, you have to think about it like a business and look for the gaps in the field.
Consequently, we created the T1D Exchange (T1DX), which consists of a registry, a bio bank and a patient community. T1DX collected data on 27,000 patients across 67 diabetes clinics within the U.S. The exchange gives us baseline information on type 1 diabetes patients and provides an infrastructure from which companies can conduct clinical trials.
Our findings have already proved helpful. A normal HbA1C glucose measure is below 6. But the registry showed us that the average HbA1C level for people with type 1 diabetes was 8.4, placing them at a significantly higher risk for all of diabetes’ complications—ranging from heart disease to blindness and nerve damage. And in any given year, about 10 percent of these patients had a severe hypoglycemic event requiring third party assistance or treatment at the emergency room. An ER visit averages between $20,000 and $25,000 and costs can go much higher if a patient is admitted to the hospital.
These findings showed that type 1 diabetes is not the relatively safe and well-managed disease that many assume and that better management is crucial for preventing dangerous complications and saving money. So, when the state of Washington wanted to reduce the number of test strips they were willing to cover, for example, we were able to show them data demonstrating a clear correlation between better control of glucose and more frequent testing.
Philanthropists must do their due diligence. Simply writing big checks to someone in a white coat is unlikely to net desired results. Ultimately, if philanthropists could learn to give money away with the same level of rigor and diligence that they apply to making money, we might see real progress accelerating advances for type 1 diabetes and other diseases.
As a society, we set ourselves up to be disappointed in failure, and this frustrates me. Instead, we should recognize that failure not only is an option, but that it should be embraced, not feared. If we are not failing 90 percent of the time, we are not taking enough risk. If curing disease was easy, it would be done.
For me, ‘building meaningful lives’ means trying different models. We have to challenge and push with new approaches and be bolder. Technology is one of the ways to ease the burden of managing disease. Through technology, we have made early advances toward automating insulin delivery, for example, and some of those systems are already working their way through the regulatory process.
Great. She is now 16 and just started driving. I’m a strong type A personality and my child is my clone, which has served her well for managing her diabetes. I recently got back from Rwanda, where in some parts diabetes is almost a death sentence. The things we worry about can be trivial compared to the plight of those in severely under-resourced communities. I'm grateful I learned that lesson early on in our mission to improve the lives of all people afflicted by this disease.