By Loren Becker, Global Health Program Analyst, FasterCures
Scientists at Penn State University think you can and they are developing a diagnostic test that detects a unique odor emitted by even asymptomatic malaria patients. A German research team is trying to create a vaccine delivery platform that activates when it comes into contact with human sweat. Who comes up with these novel, transformative ideas? They emerge when you incentivize creative, nontraditional solutions to age-old challenges.
There are no stupid ideas when developing a strategy to fight ancient diseases like malaria, recently identified as the cause of King Tut’s death, or tuberculosis, which has been found in 9,000-year-old skeletons. That is the basis for the Gates Foundation’s Grand Challenges Explorations program, whose most recent grants were announced May 10. Awarded twice a year, the $100,000 grants are meant to provide creative problem solvers with enough funding to figure out whether their crazy theories could actually work. If successful, grantees could be eligible for up to $1 million more to further develop their ideas.
The Grand Challenges Explorations program is a great example of how foundations and philanthropists are able to take risks that private companies and governments frequently avoid, a theme that often emerges in our medical philanthropy work at FasterCures. Unburdened by the demands of shareholders or legislative mandates, philanthropic donors have the flexibility to fund high risk, high reward research that disproportionately accelerates the pace of innovation.
Even as the Gates Foundation announced this round of grants, applications were rolling in for the fifth round, which will be awarded in November. We are always excited to see what transformative idea will receive funding next in an environment where scientists are encouraged to think outside the box in proposing solutions.
Monday, May 24, 2010
Monday, May 10, 2010
Briefing with NIH Director Francis S. Collins: Leveraging Federal Investment to Speed the Development of Promising Therapies for Patients
WHAT: The Cystic Fibrosis Foundation and FasterCures invite you to a briefing that spotlights the nation’s investment in medical research at the National Institutes of Health and examines how these dollars can be leveraged to create new therapies for patients and save lives.
WHO:
WHERE: Dirksen Senate Office Building, G-11
WHY: “The Cystic Fibrosis Foundation has shown the way, has lit up the path… and what’s been learned from CF can be extrapolated, generalized, to hundreds of other diseases.”- Francis S. Collins, M.D., Ph.D., Director of the National Institutes of Health
The past few decades have brought exciting scientific breakthroughs necessary to understand, diagnose, and treat many diseases. However, the ability to translate exciting advancements into treatments that can help patients severely lags behind the pace of innovation. On average, it takes 15 years to turn a scientific discovery into a viable therapy. For the millions of Americans who live with chronic and fatal diseases, this is simply too long to wait.
Fifty years ago, people with cystic fibrosis did not live long enough to attend grade school, but today, there are more than 30 drugs in a CF drug development pipeline and the median life expectancy for someone with the disease is 37 years.
NIH Director Francis S. Collins, Dr. Robert J. Beall of the Cystic Fibrosis Foundation, and Margaret Anderson of FasterCures will address:
WHO:- Francis S. Collins, M.D., Ph.D., Director, National Institutes of Health
- Senators Richard J. Durbin and Richard C. Shelby
- Robert J. Beall, Ph.D., President and Chief Executive Officer, Cystic Fibrosis Foundation
- Moderator: Margaret Anderson, Executive Director, FasterCures / The Center for Accelerating Medical Solutions
WHERE: Dirksen Senate Office Building, G-11
WHY: “The Cystic Fibrosis Foundation has shown the way, has lit up the path… and what’s been learned from CF can be extrapolated, generalized, to hundreds of other diseases.”- Francis S. Collins, M.D., Ph.D., Director of the National Institutes of Health
The past few decades have brought exciting scientific breakthroughs necessary to understand, diagnose, and treat many diseases. However, the ability to translate exciting advancements into treatments that can help patients severely lags behind the pace of innovation. On average, it takes 15 years to turn a scientific discovery into a viable therapy. For the millions of Americans who live with chronic and fatal diseases, this is simply too long to wait.
Fifty years ago, people with cystic fibrosis did not live long enough to attend grade school, but today, there are more than 30 drugs in a CF drug development pipeline and the median life expectancy for someone with the disease is 37 years.
NIH Director Francis S. Collins, Dr. Robert J. Beall of the Cystic Fibrosis Foundation, and Margaret Anderson of FasterCures will address:
- What lessons can be learned from the cystic fibrosis successes that can map the way for other diseases?
- How can federal investment at the NIH and other agencies be leveraged to answer important scientific questions in a way that accelerates the discovery and development of medical solutions for deadly and debilitating diseases?
- How can we bridge the “Valley of Death” between basic science discoveries and the creation of new therapies for patients?
Wednesday, May 5, 2010
What Metrics Matter Most in Nonprofit Medical Research?
We want your input! From operational processes to research effectiveness, tell us what measures you think matter most in evaluating nonprofit disease research foundations and their impact on the discovery and development of new cures. Whether you’re a foundation, scientist, researcher, advisor, or investor, we want to hear from you.
A year ago, FasterCures launched the Philanthropy Advisory Service (PAS) to establish clear and transparent evaluation of nonprofit activities in medical research—helping philanthropists better understand and evaluate the R&D landscape, and strategically guide their investment dollars in high-impact areas. In its initial phase, PAS features the latest medical research developments and objective analysis of key nonprofit disease research organizations in Alzheimer’s disease, malaria, multiple sclerosis, and tuberculosis.
In developing this resource, FasterCures created an evaluation tool to help measure the performance of such organizations, looking at everything from accountability to collaboration to overall contributions to the field. With a year into this effort, we’re taking another look at the framework to learn how we can make it an even more effective tool—not just for use by philanthropists looking to evaluate investment opportunities, but also for organizations seeking ways enhance their effectiveness.
PAS was developed by FasterCures and supported by grants from the Pioneer Portfolio of the Robert Wood Johnson Foundation and the Bill & Melinda Gates Foundation.
Click here to review our metrics and tell us how we can make them better and stronger. We appreciate your input and believe that, together, we can inform and increase the flow of philanthropic dollars to this critical field of research.
Related resources:
- “From Social Entrepreneurship to ‘Cure Entrepreneurship’” (April 2009) PDF of Full Report
- "Entrepreneurs For Cures: The Critical Need for Innovative Approaches to Disease Research"(May 2008) White Paper (PDF)
Monday, May 3, 2010
Patients Helping Doctors: Unlocking the Information Researchers Need
For all the human and financial capital flowing through our healthcare system, there remains a formidable list of diseases for which there are no cures, or even meaningful treatment options. Each patient—each person, more accurately—has a unique medical history and biological materials, including tissue, blood and DNA, which are vital to understanding and managing disease. But too often that information remains locked away and inaccessible to researchers.
The Patients Helping Doctors panel at the Milken Institute Global Conference was a spirited discussion about the role (and power!) of individuals in helping to cure disease and limit its damage. Moderated by FasterCures’ Executive Director Margaret Anderson, it covered the democratization of research, the “unreasonable effectiveness” of data, and the shift to a learning healthcare system.
It’s not clear to most people what their role in medical research is, agreed the panelists, and this context has to be provided to them in their frame of reference to mitigate fear and motivate participation.
“We’re working towards demystifying the research process for people,” said Susan Love of the Dr. Susan Love Research Foundation. Her Army of Women democratizes clinical research, putting women in control and increasing trial participation through viral outreach. As much as the patient is assuming a more active role, she noted, it is still important that physicians help ensure that research stays relevant.
Jack Cochran, Executive Director of The Permanente Federation, said that every physician has three roles—healer, leader and partner. “The physician is no longer the main arbiter of information,” he said. Patients now have access to information from many sources, not the least of which is the internet and social networking communities. Given this, the fundamental goal (and role) of the doctor has shifted from how many patients he/she can see, to how many patients’ problems they can solve.
The panelists went on to discuss the fact that technology is advancing faster than medicine. As technology has improved and more and more tools (or “toys”) become available, research has been, in some ways, distracted by all of the things the “toys” can do, rather than remaining focused on how to utilize them in the context of solving the clinical problems that patients need answers to.
“What’s missing is meaning” said Jamie Heywood, Chairman and Co-Founder of Patients Like Me. “The individual defines the meaning.” As an engineer, he argued that it’s not about the art, but about the science, and that better information platforms are critical to accelerating progress towards medical solutions. “People are altruistic by nature” he noted, “but we need to give them what they need to contribute.”
When asked about the “wish list” for medical research moving forward, John Wilbanks of Creative Commons called for a federal data sharing policy that would allow taxpayer funded data to be shared in an open way so that innovation could be crowd-sourced and progress towards cures accelerated.
Ultimately, accountability, continuous learning, and partnership/communication with the individuals involved in the research will help to build the trust and momentum needed to speed the path to cures.
The Patients Helping Doctors panel at the Milken Institute Global Conference was a spirited discussion about the role (and power!) of individuals in helping to cure disease and limit its damage. Moderated by FasterCures’ Executive Director Margaret Anderson, it covered the democratization of research, the “unreasonable effectiveness” of data, and the shift to a learning healthcare system.
It’s not clear to most people what their role in medical research is, agreed the panelists, and this context has to be provided to them in their frame of reference to mitigate fear and motivate participation.
“We’re working towards demystifying the research process for people,” said Susan Love of the Dr. Susan Love Research Foundation. Her Army of Women democratizes clinical research, putting women in control and increasing trial participation through viral outreach. As much as the patient is assuming a more active role, she noted, it is still important that physicians help ensure that research stays relevant.
Jack Cochran, Executive Director of The Permanente Federation, said that every physician has three roles—healer, leader and partner. “The physician is no longer the main arbiter of information,” he said. Patients now have access to information from many sources, not the least of which is the internet and social networking communities. Given this, the fundamental goal (and role) of the doctor has shifted from how many patients he/she can see, to how many patients’ problems they can solve.
The panelists went on to discuss the fact that technology is advancing faster than medicine. As technology has improved and more and more tools (or “toys”) become available, research has been, in some ways, distracted by all of the things the “toys” can do, rather than remaining focused on how to utilize them in the context of solving the clinical problems that patients need answers to.
“What’s missing is meaning” said Jamie Heywood, Chairman and Co-Founder of Patients Like Me. “The individual defines the meaning.” As an engineer, he argued that it’s not about the art, but about the science, and that better information platforms are critical to accelerating progress towards medical solutions. “People are altruistic by nature” he noted, “but we need to give them what they need to contribute.”
When asked about the “wish list” for medical research moving forward, John Wilbanks of Creative Commons called for a federal data sharing policy that would allow taxpayer funded data to be shared in an open way so that innovation could be crowd-sourced and progress towards cures accelerated.
Ultimately, accountability, continuous learning, and partnership/communication with the individuals involved in the research will help to build the trust and momentum needed to speed the path to cures.
Wednesday, April 28, 2010
Accelerating Cures by Building a More Effective and Efficient FDA
Kristin Schneeman, Program Director, FasterCures
A distinguished panel of observers from patient organizations and industry declared themselves to be in “violent agreement” on the urgent need to increase resources and build scientific capacity at the FDA, with one panelist calling it of “strategic importance to the country.” Among the points of agreement were:
Garry Neil, Corporate Vice President at Johnson & Johnson’s Corporate Office of Science and Technology, detailed the risky, unpredictable, and costly pathway to new drug approval, a process that hasn’t changed substantially in 50 years. He reiterated some oft-cited facts – that it costs well over $1 billion to develop an approved drug, and that despite exponential increases in investment by government and industry the number of new therapies approved every year has declined. “There is nothing black and white here. The whole process is about the progressive removal of uncertainty. And there will never be complete certainty.”
Ellen Sigal, Chair and Founder of Friends of Cancer Research and an advisor to many government cancer research initiatives, provided the view of many patient advocates who find FDA impenetrable, with no mechanism in place for patient input, a confusing structure, and a lack of expertise in the places where it’s needed. She said the patient voice is not being heard on Capitol Hill, that concerns (many of them legitimate) about safety were all but drowning out patients’ appetite for innovation, willingness to risk-share, and need for better drugs.
Jonathan Simons, President and CEO, Prostate Cancer Foundation, offered up some interesting models for addressing some of these challenges at FDA. One was for some kind of “honest broker knowledge exchange” within FDA that facilitates collaboration among stakeholders in the system, evaluates all data presented by stakeholders, and creates value through transmission of knowledge. He also proposed that FDA have a sort of “amicus curiae” process, as they do in the court system, to allow meaningful input by stakeholders other than regulated industry.
Cassell held up as a success story the development of anti-retrovirals to treat HIV – 29 new therapies approved in relatively short time, achieved when stakeholders worked together across sectors with optimal speed. Simons noted that a significant reason for this success was leadership – that Anthony Fauci at the National Institute of Allergy and Infectious Diseases had responsibility for addressing the crisis and invited in the patient community to provide guidance. Can this success be replicated? “It happened with HIV, it can happen again,” said Neil.
The panel ended on a surprisingly hopeful note, with most panelists echoing Sigal’s optimism that “there is a growing recognition that the agency needs more resources, needs collaboration, needs science, and that its science is different from NIH’s science.” All agreed that the public and Congress need to be better educated about the importance and impact of FDA – not only on health but on our economy and national security.
A distinguished panel of observers from patient organizations and industry declared themselves to be in “violent agreement” on the urgent need to increase resources and build scientific capacity at the FDA, with one panelist calling it of “strategic importance to the country.” Among the points of agreement were:
- FDA suffers from an almost scandalous lack of resources. The agency that regulates 25 cents of every dollar U.S. consumers spend has a budget that is half what Americans spend every year on potato chips.
- Scientific capacity at the agency is very weak and is inhibiting the agency’s ability to evaluate new therapies moving through the pipeline.
- The agency badly needs to be able to collaborate meaningfully with other sectors – what some refer to as the “triple helix” of government, academia and industry – without being constantly “demonized” for conflict of interest.
Garry Neil, Corporate Vice President at Johnson & Johnson’s Corporate Office of Science and Technology, detailed the risky, unpredictable, and costly pathway to new drug approval, a process that hasn’t changed substantially in 50 years. He reiterated some oft-cited facts – that it costs well over $1 billion to develop an approved drug, and that despite exponential increases in investment by government and industry the number of new therapies approved every year has declined. “There is nothing black and white here. The whole process is about the progressive removal of uncertainty. And there will never be complete certainty.”
Ellen Sigal, Chair and Founder of Friends of Cancer Research and an advisor to many government cancer research initiatives, provided the view of many patient advocates who find FDA impenetrable, with no mechanism in place for patient input, a confusing structure, and a lack of expertise in the places where it’s needed. She said the patient voice is not being heard on Capitol Hill, that concerns (many of them legitimate) about safety were all but drowning out patients’ appetite for innovation, willingness to risk-share, and need for better drugs.
Jonathan Simons, President and CEO, Prostate Cancer Foundation, offered up some interesting models for addressing some of these challenges at FDA. One was for some kind of “honest broker knowledge exchange” within FDA that facilitates collaboration among stakeholders in the system, evaluates all data presented by stakeholders, and creates value through transmission of knowledge. He also proposed that FDA have a sort of “amicus curiae” process, as they do in the court system, to allow meaningful input by stakeholders other than regulated industry.
Cassell held up as a success story the development of anti-retrovirals to treat HIV – 29 new therapies approved in relatively short time, achieved when stakeholders worked together across sectors with optimal speed. Simons noted that a significant reason for this success was leadership – that Anthony Fauci at the National Institute of Allergy and Infectious Diseases had responsibility for addressing the crisis and invited in the patient community to provide guidance. Can this success be replicated? “It happened with HIV, it can happen again,” said Neil.
The panel ended on a surprisingly hopeful note, with most panelists echoing Sigal’s optimism that “there is a growing recognition that the agency needs more resources, needs collaboration, needs science, and that its science is different from NIH’s science.” All agreed that the public and Congress need to be better educated about the importance and impact of FDA – not only on health but on our economy and national security.
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