“Partnering with Patients” at the Biotech Industry Organization Convention

by Kristin Schneeman, Program Director, FasterCures

All I can say is, I wish I’d read Maureen Martino’s FierceBiotech blog before I left for Chicago.

A week and a half ago I was gearing up to moderate a panel discussion at the Biotechnology Industry Organization’s annual convention in Chicago about venture philanthropy and the impact it’s having in accelerating the development of new treatments for patients. We’ve chaired panels similar to this one at BIO in the past, highlighting the financial resources patient organizations can bring to the table and the partnerships they’re increasingly forming with companies to develop products. This year we decided to focus in a little more on the non-financial assets these organizations also bring -- the “patient capital” in the form of tissue banks, medical data, and participation in clinical trials – as well as their ability to serve as “systems integrators” bringing all of the stakeholders together and smoothing over the information and funding gaps in the research process.

We assembled a phenomenal panel - passionate patient advocates, but also serious and successful R&D professionals -

many of whom had come from industry, started companies, and consulted with companies. They included:

• Howard Fillit, Executive Director of the Alzheimer’s Drug Discovery Foundation (ADDF);
• Dick Insel, Vice President for Research at the Juvenile Diabetes Research Foundation (JDRF);
• James O’Leary, Chief Innovation Officer at Genetic Alliance (GA);
• Louise Perkins, Chief Scientific Officer at the Multiple Myeloma Research Foundation (MMRF); and
• Steve Perrin, Chief Executive Officer and Chief Scientific Officer at the ALS Therapy Development Institute (ALS TDI).

Their organizations have invested more than a billion dollars in medical research, have global reach, have supported hundreds of drug discovery programs and scores of clinical trials, and have played a critical role in development of products that are helping patients today.

Among the many impressive nuggets I jotted down during the session:

• MMRF has demonstrated its ability to activate clinical trials 30-40% faster than the industry standard, through its powerful consortium of 13 leading academic research institutions.
• JDRF is pursuing more than 20 development efforts in partnership with companies -- many of which have been picked up by large industry players – including novel agreements with Johnson & Johnson and Novartis to help those companies fill their product pipelines.
• ADDF has been instrumental in the creation of several startup companies that have gone on to leverage enormous amounts of follow-on investment.
• GA is providing resources to help patient groups in rare genetic diseases marshall the patient assets they need to help them engage companies in developing treatments for those diseases.
• ALS TDI has created a new model, a “nonprofit biotech company,” that is shaving millions of dollars off the development process and de-risking industry investment “by keeping patients in mind from the very start.”
  
  

• • At the end of the session, I offered a question for further reflection and discussion: What are the implications of putting the patient (intermediated by organizations like these) at the center of the research and development process – not as research subjects or consumers, but as partners and decisionmakers?

After I left Chicago I came across a blog posted by FierceBiotech’s Maureen Martino from BIO earlier in the week. In it she recounts her chance conversation with three breast cancer survivors in an airport shuttle. She asked them what they would say if they could talk to the companies developing breast cancer treatments: “A whole lot, as it turns out.”

Among their frustrations was the lack of true communication among patients, their physicians, and particularly the companies developing drugs to help them. “They should pay us to come talk to them,” commented one. She may have said it half in jest, but I suggest we take that idea seriously. And invite the FDA to listen in.

Kudos to Maureen Martino for trying to present a “human face [to] the drug industry.” We’ve been trying to do the same thing for a number of years by supporting the work of innovators like our BIO panelists, who are the trusted intermediaries for meaningful participation by patients in the research process. As a participant at a recent FasterCures meeting has said, “Patients are the only unique resource in the entire continuum … they can create the ultimate bargaining unit.” Where’s Norma Rae when you need her?