The FasterCures Track: April 2013 - Patients are a virtue

The FasterCures Track
MedicalProgress-Benthin-Graphic-patients

When it comes to medical research, patience is not a virtue, patients are. For the medical research system to work, it must not only focus on patients, it should also engage patients.

This is what drives our work at FasterCures. We strive to ensure that the medical research system responds better to the needs of patients and that patients have the opportunity to help shape that process. We know from best case examples that the most successful models in medical research and development involve all sectors.

This past month, our Webinar featured how patient-driven organizations are moving beyond simply creating patient registries or serving as a conduit to participants for clinical trials and are marshaling their forces in new and more comprehensive ways.

We continue our steadfast efforts to reaffirm our nation's commitment to our biosciences. In a Baltimore Sun opinion piece, FasterCures Founder and Chairman Mike Milken and former NIH Director Elias Zerhouni argued that we need to deliver on the promise to young scientists who are currently discouraged by the perceived lack of opportunity in science.

As we all know, there is power in having advocates share their personal story to compel change in the system. We continue to strengthen the Time Equals Lives platform to collect stories about how medical research matters, and why we must make it a priority.

If the first quarter is any indication about what's to come, your FasterCures team looks forward to working with you to deliver meaningful outputs and outcomes.

Warm regards,

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Margaret Anderson
Executive Director
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FasterCures Program Updates

Policy and Process

Our goal: Improve research processes and develop policies that will better support efficient development and approval of new therapies.

Mike Milken and Elias Zerhouni Baltimore Sun op-ed: Delivering on the Promise to Young Scientists
In the op-ed, the authors say that funding newly trained scientists is not an entitlement but a strategic investment in America's future health and prosperity.


BioCenturyTV interviews Margaret Anderson on sequestration's impact on FDA, NIH

FasterCures Executive Director Margaret Anderson recently appeared on the BioCentury broadcast with host Steve Usdin to examine the long-term ramifications on medical research and health outcomes if sequestration is not repealed. "I worry about the treatments that we're not going to discover as a result of these cuts," she said. "What does this mean downstream; what does it mean in terms of the unmet needs of patients who have diseases with no treatments or cures? The NIH investment is a very powerful driver to this entire enterprise."


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Rep. John Sarbanes of Maryland (second from left) meets with members of the Alliance for a Stronger FDA

Helping make medical research a national priority
Members of Congress play a critical role in charting the course of medical progress. We joined partners at the Alliance for a Stronger FDA to deliver key messages about the need for all sectors in the medical research system to be robust and reliable - including federal agencies like the National Institutes of Health and the U.S. Food and Drug Administration, academic institutions, the biotechnology and pharmaceutical industries, medical research foundations, and patient advocates.


Rallying for medical research

On April 8, FasterCures will join more than 150 partnering organizations for the Rally for Medical Research. The event will unite millions of Americans across the country to raise awareness about the critical need for a sustained investment in the National Institutes of Health and other federal agencies that improve health, spur more progress, inspire more hope, and save more lives.


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Collaboration

Our goal: Stimulate innovative collaborations across all sectors – academia, government, industry, investors, and nonprofits – to speed up the time it takes to get new therapies from the lab to patients.

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Webinar focuses on building patient-centered research networks
Engaging patients in the research process is more complex and exciting now than ever before. Patient-driven organizations are moving beyond simply creating patient registries or serving as a conduit to participants for clinical trials and are marshaling their forces in new and more comprehensive ways. In a FasterCures Webinar on March 20, participants heard about two exciting new models of such "patient-centered research networks." The T1D (Type 1 Diabetes) Exchange consists of an integrated clinic network of more than 65 clinics across the U.S., a biorepository, and Glu, an online community with mobile capabilities for people touched by type 1 diabetes. Registries for All Diseases recently won the Sanofi Collaborate/Activate challenge - a cross-disease, crowdsourced registry that promises to break down the silos between diseases and gather information from patients in a standardized way.

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Melissa Stevens discussed alternative financing during a BIO-Europe panel

FasterCures engages with European audiences
FasterCures traveled to Brussels in early March to participate in Collaborating for Cures, a joint convening between U.S.-based Critical Path Institute and the Innovative Medicines Initiative (IMI), which is the largest public private partnership (PPP) to enhance pharmaceutical innovation in Europe. The meeting discussed lessons learned in organizing PPPs and explored potential collaborations among complementary programs. The meeting served as platform for connecting with key European Union stakeholders across government, industry, and academia. FasterCures also visited the IMI offices to meet with their program staff and learn more about how they are stimulating and sustaining collaboration. This information will be used as part of the FasterCures Collaboration Playbook, a cross-sectional and in-depth analysis into the governance, financing, and resource sharing models of multi-stakeholder consortia that is due out this summer.

FasterCures next visited Barcelona to participate in the BIO-Europe Spring Conference for the first time. Melissa Stevens, deputy executive director, spoke on an alternative financing panel and discussed the role of venture philanthropy in medical research. The subject generated a lot of interest from this international audience of biopharma executives. Stevens and Susanna Ling, associate director of development, had more than 20 meetings over three days and introduced the work of FasterCures to European agencies, investors, and R&D companies. We hope all these new relationships will lead to a greater international participation at Partnering for Cures and in FasterCures work.

Panelists, from left to right: Margaret Anderson of FasterCures, Amy Comstock-Rick of Parkinson's Action Network, Mary Dwight of Cystic Fibrosis Foundation, and Samantha Ventimiglia of Vertex Pharmaceuticals. The panel was moderated by Eli Lilly's Michele Oshman (not pictured).

FasterCures focuses on collaboration among sectors at MDBio
Margaret Anderson was a panelist last month at MDBio's Leadership Series: The Rising Tide of Non Traditional Funding Opportunities. Vertex's Kalydeco drug was at the forefront of the conversation about how venture capital funding, precision patient selection, and early and open communication with the FDA led to an astoundingly accelerated approval. The Cystic Fibrosis Foundation's Mary Dwight summed up the efforts that led to the fast-tracked discovery and approval: "If there's one word that hallmarks all of our efforts, it's collaboration."


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Patients

Our goal: Increase patient engagement in research.

HonestBrokers2Honest Brokers for Cures – candid insights from patient groups transforming medical research as we know it
In this report, FasterCures features insights from 20 leaders of medical research foundations, each focused on finding a cure by ramping up their in-house expertise, and tackling the science where it needs the most effort and resources, from basic to clinical research, and everywhere in between.

Through these interviews emerges a trend toward outcomes-oriented research driven by these entrepreneurial nonprofit groups determined to deliver results for patients.


Personal stories demonstrate that saving time means saving lives in medical research

Otis Brawley
Jenny and her husband Pat

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Capital

Our goal: Facilitate greater access to and more strategic allocation of capital to support results-driven medical research.

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Financial innovation series highlights ANTABIO and WiSeed
In this month's series on novel R&D funding models, FasterCures profiles ANTABIO, a France-based biopharmaceutical company that partnered with the crowdfunding platform WiSeed to complete the first successful crowdfunding round for a biotechnology start-up company. ANTABIO successfully raised €300,000 in three months from more than 200 investors through WiSeed. An accredited investor then made an approximately €500,000 investment and bought back the crowdfunded shares for a return on investment of 44 percent.

 

 

Tools you can use

Download and share the following graphics from our Time=Lives campaign and recent publications:

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For more infographics on what's standing in the way of progress, go to
http://www.timeequalslives.org/spreadthemessage.html
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Measuring and Improving Impact: A Toolkit for Nonprofit Funders of Medical Research Honest Brokers for Cures: How Venture Philanthropy Groups are Changing Biomedical Research