Public funding of medical research in the United States is a ceaseless struggle over limited resources, with outcomes often determined by a murky mix of politics and lifeboat ethics.
Take pancreatic cancer as an example.
The estimated number of new cases of pancreatic cancer in the United States is around 50,000 to 54,000 annually, and it comes in last on the National Cancer Institute’s list of common cancers. With a comparatively low number of new pancreatic cancer cases each year, public research dollars are hard to come by—funders tend to prioritize fighting diseases that inflict the greatest harm on the greatest number of people, a flow that reflects a mix of grassroots lobbying power and rational health policy.
On the other hand, though, pancreatic cancer is one of the most deadly types of cancer, with an average relative one-year survival rate of 20 percent and a five-year relative survival rate of just 7 percent. It kills more Americans every year than prostate and melanoma cancer combined.
These merciless statistics help explain why pancreatic cancer sufferers and their families have worked so hard to bring new private funding into the mix, to offset the lack of public dollars.
When Pamela Acosta Marquardt learned of her mother’s diagnosis with pancreatic cancer in 1996, she began exploring every avenue she could to dig up more information about the disease. An online discussion board hosted by a pathologist at Johns Hopkins University Medical Center was the only useful resource she came up with.
Marquardt continued to visit discussion boards after her mother passed, and over the course of two years, she noticed that people on the discussion boards were becoming increasingly frustrated due to the lack of resources and assistance available to them. And that was when Marquardt decided to take action.
After hosting a black-tie celebrity fundraiser and with a little pro bono help from a New York Attorney who lost both of his parents to pancreatic cancer, Marquardt found herself running a little nonprofit that was solely dedicated to the disease. In 1999, along with co-founders Paula Kim and Terry Lierman, the Pancreatic Cancer Action Network (PanCan) was officially incorporated.
Since then, the outfit has grown, pulling in around $36 million in revenue in 2015. That year, PanCan also landed its largest donation to date, $15 million from the foundation of entrepreneur and philanthropist Skip Viragh, who lost his battle with pancreatic cancer in 2003.
PanCan's rise is a great example of the kind of bottom-up organizing that we see often around medical research. The populist fight against diseases underscores the tremendous power of civil society in the U.S. Americans don't wait around for government to solve their problems.
PanCan runs a number of its outreach and support programs. However, a critical element to the organization’s vision—which is doubling the pancreatic cancer survival rate by 2020—is funding scientific research. The funding pot for 2017 totals nearly $13 million, an over 30 percent increase from 2016.
PanCan’s $13 million research investments in 2017 are dedicated to its research grants program and its own internal research initiatives. Among the largest of the grants are two $1 million awards for early detection and precision medicine projects. The remaining grants available range in amount from $100,000 to $600,000 and span anywhere from two years to five years. The exception, here, is its Frederick National Laboratory for Cancer Research KRAS Travel Scholarship for which awards are based on need. You can get more detail regarding PanCan’s current and upcoming research opportunities here.
PanCan’s research investments have grown at a steady pace over the past couple of years. This is good news for pancreatic cancer researchers battling it out for the relatively scarce funding dollars out there. According its latest annual report, over the course of 10 years (2003 to 2013), for every $1 PanCan invested, its grantees secured an average of $8.20 in additional funding to support their ongoing pancreatic research.