Disease foundations are playing an increasingly important role in advancing research and helping to bring new treatments to market. Their unique expertise in specific disease areas, along with their keen understanding of patient needs and access to clinical thought leaders and patients, can enhance and accelerate the clinical development of new treatments.
At a 2014 BIO International Convention Breakout Session, session moderator Gail Maderis, President and CEO of BayBio, opened with some key statistics about the need for stakeholders to have more discussions about their collaborations. BayBio’s research has shown that, while both industry and disease foundations rate their partnerships as “very successful,” there is a disconnect between their understanding of one another. For example, 5 percent of disease foundations believe that industry partners don’t understand the foundation’s full capabilities, while 59 percent of companies feel that disease foundations don’t truly understand what goes into research and development.
Panelists shared their thoughts on two successful collaborations.
Michael Richman, President and CEO of Amplimmune, spoke about their collaboration with the National Multiple Sclerosis Society (NMSS) that began with a failed grant proposal. Amplimmune submitted a grant proposal they thought for sure would be funded, however “[NMSS] let us know we weren’t necessarily the experts we thought we were,” said Richman.
But the relationship didn’t start and end there. For Timothy Coetzee, Chief Advocacy, Services, and Research Officer at the NMSS, there’s no benefit to patients when disease foundations take a “fund it and forget it approach.” That attitude extends to the grant proposal process. The NMSS review board was impressed enough with the science behind Amplimmnue’s AMP-110 candidate that the foundation connected the company with key opinion leaders who advised Amplimmune on how to reshape the proposal.
After revising and resubmitting their proposal, Amplimmune received a $500,000 grant and began an important relationship with the NMSS. The common ground – a collective focus and passion on treating MS patients – spurred the partnership and open lines of communication allowed it to thrive and keep all stakeholders, including board members from both organizations apprised of the progress.
When Astra Zeneca acquired Amplimmune last year, the NMSS directly benefitted due to the equity stake it had been given in the company. Coetzee noted that the NMSS “isn’t in the business of trying to be a venture capital firm,” but always looks to balance risk and reward when it provides grants to industry. This is especially important with funds that are hard-earned by volunteers who want to see their contributions being put to good work for the benefit of patients.
Communication is key to the success of these types of successful collaborations, but transparency ensures longevity. That was the key takeaway from the part of the session that outlined Ceregene’s partnership with the Michael J. Fox Foundation (MJFF) on evaluating a drug candidate for Parkinson’s disease. Ceregene was the first company to apply for clinical trial funding from MJFF, and the foundation saw promise in Ceregene’s research.
Nearly 10 years and about $7.5 million in funding later, both parties are clear on how they’ve managed to work together for so long. “We had the common goal to help patients,” said Jeffrey Ostrove, President and CEO of Ceregene (Sangamo acquired company last year). “We were completely transparent about issues.” That openness went a long way towards establishing mutual trust.
Evelia Johnston, MJFF’s Research Partnerships Officer, agreed. When asked to share her thoughts on what has made this collaboration successful, she didn’t hesitate to say, “transparency and openness in sharing data and results as they come in.” The organizations ran into challenges, but a partnership built on communication and transparency allowed them to quickly identify and solve problems.
The basis for this discussion and the partnerships they discussed, was the people. These are like-minded people who are passionate about advancing understanding about diseases and working to develop the treatments that patients need most.