FasterCures Finds Outcomes, Metrics, and Strategic Leadership Define the Effectiveness of Venture Philanthropy Groups

Two new reports outline the practices and approaches of nonprofit funders of medical research

FasterCures today released two reports that paint a vivid picture of how medical research foundations, also known as venture philanthropy groups, have transformed the medical research enterprise. These entrepreneurial groups are accelerating medical research and development by tackling science where it needs the most effort and resources, and applying innovative business approaches in the pursuit for a cure.

Both resources tell a compelling narrative of how venture philanthropy groups are creating a culture in medical research that is mission-driven, results-oriented, and focused on the true bottom line: preventing, diagnosing, and curing disease.

• The first, Honest Brokers for Cures: How Venture Philanthropy Groups are Changing Biomedical Research, features insights from leaders of 20 venture philanthropy groups. This publication features valuable insights and perspectives from leaders of medical research foundations that are transforming the cure enterprise by virtue of how they find and fund research. In this report, FasterCures dissects the business model that has emerged from the shared sense of urgency and frustration stemming from these patient-driven organizations, and their laser-sharp focus on outcomes.

• The second, Measuring and Improving Impact: A Toolkit for Nonprofit Funders of Medical Research, is a how-to guide for foundations seeking to apply some of the best practices and lessons learned from venture philanthropy groups who’ve demonstrated their effectiveness.  It provides a common framework for assessing and improving organizational effectiveness, and a panoply of ideas, questions, and models to help guide new and emerging nonprofits with strategic and tactical choices.

Venture philanthropy groups play an outsized role in improving the medical research and development system to better meet the needs of patients. Since its inception, FasterCures has continued to shine a light on the successes of these foundations in an effort to amplify their lessons learned and sense of urgency to the rest of the medical research community.

“In the end, the most central characteristic of these groups is their close connection to the disease they are pursuing. For most, it is personal—either they or a family member or close friend is or has been affected by the disease,” said Margaret Anderson, executive director of FasterCures. “It spurs them to find the dollars to meet the challenges and change the trajectory of research. We can all benefit from the lessons they've learned.”


                                                  

To download these publications, visit http://www.fastercures.org/Publications/vp.php

 

Sequestration will be devastating to the cure enterprise

By Margaret Anderson
Executive Director, FasterCures

For months, the defense industry has taken the Hill and media outlets by storm detailing the potentially catastrophic impact “sequestration” will have on national security, defense jobs, and our economy. The “S” word stands for automatic spending cuts that will take into effect if Congress does not reach a budget agreement to reduce the deficit by the end of the year.

Members of Congress have expressed concern over the potential cuts to defense programs, and even called for carve outs to protect the Pentagon funding. There has been little mention, however, of the impact sequestration would have on nondefense programs, such as medical research at the National Institutes of Health (NIH), or education, which are also subject to the same across-the-board cuts imposed by the Budget Control Act of 2011.

Last week, we learned a little more about the impact of the sequester’s $1.2 trillion cuts on nondefense programs because of a report released by Senator Tom Harkin (D-IA). The report details the “destructive impacts on the whole array of Federal activities that promote and protect the middle class in this country – everything from education to job training, medical research, child care, worker safety, food safety, national parks, border security and safe air travel." The report even indicates that the “economic effects of cuts to nondefense programs could be worse than cuts to Pentagon spending.”

There is chilling evidence of what we can expect to happen to medical research at NIH should sequestration take place:

• NIH would issue about 700 fewer grants to medical researchers in Fiscal Year 2013, which means 700 fewer opportunities to find medical treatments and cures;
  
• The total cut to NIH would be $2.4 billion;
  
• The National Cancer Institute alone would be cut by $396 million;
  
• The National Center for Advancing Translational Sciences would lose nearly $45 million; and
  
• All 50 states would be expected to suffer from an across-the-board cut.
  

The report also illustrates how cuts to NIH will result in not only job loss (NIH currently supports approximately 432,000 nationwide), but also a reduction in medical innovation.

At FasterCures, we are deeply concerned by these numbers and urge members of Congress to identify a solution to sequestration before we see a decline in medical research. The ripple effects will be felt far and wide – in every university, every medical research setting, and every household that’s been struck by disease.

We know today that investments in scientific research, particularly in bioscience, not only save and improve lives, but also offer the greatest potential returns and serve as the best economic stimulus any nation can make. Nations that lead the world in bioscience will be the global leaders of the 21st century. No field has greater potential to improve health, create jobs, and stimulate the economy; and no field provides greater returns on investment. 

Important references:

• Research!America’s Sequestration Report: http://www.researchamerica.org/uploads/0725REAPpresentation.pdf
  
• Leadership in Decline: Assessing U.S. International Competitiveness in Biomedical Research: http://www.unitedformedicalresearch.com/wp-content/uploads/2012/05/Leadership-in-Decline-Assessing-US-International-Competitiveness-in-Biomedical-Research.pdf
  
• The Global Biomedical Industry: Preserving U.S. Leadership: http://www.milkeninstitute.org/publications/publications.taf?function=detail&ID=38801285&cat
  
• FASEB’s NIH State Information Factsheets: http://www.faseb.org/Policy-and-Government-Affairs/Advocacy-on-Capitol-Hill/Explore-Resources/NIH-State-Information-Factsheets.aspx
  

Glass Half Full

FasterCures has been helping to incubate a new disease research entity – the Melanoma Research Alliance. The Web site went up recently (www.melanomaresearchalliance.org) and the first funding RFP is out (details can be found on the Web site). We took lessons learned from the experience of the Prostate Cancer Foundation and other disease research groups, and shortened the number of pages for the funding proposal, condensed the review turnaround time, and we will send grant award notifications out in spring.

By coincidence, I had a routine appointment with my dermatologist right after our State of Melanoma Research Call to Action meeting in November. When I mentioned to my dermatologist that I’d been part of the process to create this new melanoma entity, he replied that we already know all about melanoma but of course new funds for research were always a good thing.

More money can help, but that being said, this non-scientist would posit that we don’t have all of the answers. The American Cancer Society estimates almost 60,000 people in the United States were diagnosed in 2007. Additionally, 15 percent of those with metastatic melanoma will live for five years. It got better, or worse. When I asked if I should be getting a full body check since I’d been a lifeguard through my teenage years and spent most waking moments poolside, the reply was “sure, that is a good idea.” Hmm, I thought it would be a good thing if it hadn’t been my idea, but at any rate, I made an appointment. However, even if it is a good idea, detection methods still need to be improved and are currently imprecise.

Certainly knowing one or two more cures than we know now would be a major improvement and would save thousands of lives. It is certainly of concern when the medical profession’s knowledge of what is known and not known is lagging. Much to do. While this story might end on a negative note, I’ll go with the glass half full approach, since I am invigorated by the prospect of what the newly formed Melanoma Research Alliance will be getting done in 2008 for those currently diagnosed with melanoma and those at risk. Here's to getting the research done in a streamlined way, getting results translated into therapies as fast as possible, and getting up-to-date information to clinicians who are on the front lines.

Margaret Anderson, COO, FasterCures

It’s about Cancer, Stupid.

Lance Armstrong’s cancer forum is putting the wrong people under the lights. Even if the presidential candidates found a cure for cancer right there on stage, with the way the media covers politics the rest of us would never know. How is it possible that after discussing their approaches to winning – dare I say it – the war on cancer -- the headlines are about which candidate is willing to take which lobbyists’ money? I thought journalists were taught not to bury the lead. Well the lead is the toll in death and suffering cancer is taking, not the campaign contributions candidates are taking.

The press continues to confuse healthcare economics with curing diseases. The benefit of Lance’s gathering is it forces candidates to go beyond the “more money” argument and into how they would change something. In a discussion about curing and surviving cancer, it is folly to debate which lobby groups are “acceptable” as donors. The last time major health players were left out of the game, they defeated a popular President by putting two actors playing man and wife sitting around a kitchen table shaking their heads. If we are going to create medical solutions for cancer, we will need everybody at the table with open minds, collaborative natures, and valuable human and financial resources. And not shaking their heads.

Lance was right to ask the field of future Presidents how they would attack cancer. Now let's start asking the press to cover the answers and not let them change the subject to pick silly fights.

Greg Simon, President, FasterCures