The story of venture philanthropy in medical research is getting told with even greater frequency lately. Many of its leaders are on the road constantly presenting about why their organizations came to be, what strategies they use to understand the root causes of their diseases, and what they are doing to support translational research. This was the central question of an Institute of Medicine (IOM) Forum on Neuroscience and Nervous System Disorders meeting in early October.
At FasterCures, we work with many of these groups through our TRAIN initiative. We released the “Entrepreneurs for Cures” report that articulates the reason many of these groups were formed: that their only bottom line is curing disease and improving the lives of patients.
At the IOM meeting, some of the problems in reaching cures were restated before the group dove in to the various approaches and models that the venture philanthropy groups use to move the needle. The statistics about drug development are a stark reminder of the enormous challenges facing biomedical research and the quest for faster cures. Despite increasing knowledge and investment in R&D spending, drug registrations are falling and the investment costs per successful drug launch has escalated in recent years. For many diseases, treatments – let alone advances – are few and far between. The ‘valley of death’ in drug development is a story that venture philanthropy groups know all too well.
The tag lines for the meeting could have been “Focus, Focus, Focus” with a healthy dose of “If you don’t know where you are going, any road will get you there.” Two themes that are particularly poignant in today’s economic climate. With each day’s headlines of the stock market tumbling to new lows, there is a greater sense of uncertainty about how this will impact medical research philanthropy. Groups need to be laser-focused, and they need to have an action plan.
Dick Insel of the Juvenile Diabetes Research Foundation pointed out that doing this work requires that you know your product, partners, and yourself to be effective. Expectations between partners need to be aligned. In terms of knowing yourself, he pointed out the importance of managing expectations with donors and the patient community, and also the balance between hope versus hype in doing disease research. Sophia Colamarino of Autism Speaks described how patients and in the case of autism, the parents of patients have to be brought into the research process and need translation services. And when there are accomplishments, they have to be given credit too. Everyone agreed that knowledge needs to be constantly pushed out to many audiences in order to move closer to the goal. The scientific community needs it, industry needs it, and of course patients need information to know how new findings get mapped against the search for cures.
Katie Hood of the Michael J. Fox Foundation spoke of how the value-add they bring is that her group is constantly looking at what worked and didn’t work, and what MJFF needs to do to increase the odds of success of what they are funding. She also noted that the valley of death is not the same for each disease, and that venture philanthropy groups need to create a roadmap. Each group should ask what unique value is of what they bring to the table, and how they can target everything towards that goal.
These groups often talk about milestones, and the requirements they place on grantees when they get their funds. Some groups pointed to examples where they stopped or held payments. This requires active management and forecasting of the research portfolio. Some described how the goal was to bring more partners and players into their fields, and they saw their role as lowering those barriers to entry.
One participant summed it up, “Nobody has the incentive to think about our disease process like we do.” Jonathan Simons of Prostate Cancer Foundation talked about their metrics in plain and simple terms – lives saved and a reduction in the death rate.
Someone pointed out that the role of these groups is to shine a light on what is possible in disease research. Indeed they do. Next challenge, how do you spread this line of thinking and these tactics even farther?