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FasterCures Blog

FasterCures is pushing create a new mindset in the medical research and development system so that diverse and important stakeholders can share their visionary thinking openly, work together, and be driven by what patients need.

Updated: 2017-12-10T22:16:08.982-05:00


Give me your innovators yearning to breathe free


by Bernard Munos, FasterCures Senior FellowIngenuity defines America. From sea to shining sea, the country bristles with innovation. Google, eBay, Intel, Tesla, Yahoo, SpaceX, LinkedIn, Flickr, Facebook, exemplify the indomitable American genius… or perhaps the indomitable genius of its immigrants, as all these companies were (co-) founded by foreign-born entrepreneurs.This is no artifact. Economic geography shows that innovation thrives where cultures blend. It is true of countries built by immigrants, such as the United States, Australia, or Israel. It is also clear from the capitals of former European empires – Berlin, Vienna/Budapest, Paris, London – where the mingling of ethnicities created the ferment that transformed them into cosmopolitan beacons of artistic and technological power. Further back in history, Florence, Venice, Rome, Athens, Constantinople, and Alexandria have all at some point leveraged their positions on trading routes, or their dominion over faraway provinces, to create the cultures that gave us the Renaissance, Hellenism, and the Islamic golden age – when roving scholars from Cordoba to Bukhara made major contributions to medicine, mathematics, and astronomy. Today, innovation continues to thrive where cultures overlap: Silicon Valley, Boston, Quebec, Singapore, the Baltic Rim, Switzerland, Flanders, and many other regions.  In the United States, the foreign-born represent 12% of the population, but they account for 25% of its Nobel prizes, 25% of the founders of venture-backed companies,30% of its patents , and 47% of its scientists and engineers with doctorate degrees. Immigrants are over-represented among members of the National Academy of Sciences and the National Academy of Engineering, and among the authors of highly-cited science and engineering journal articles.It is as if innovation somehow comes more naturally to people who internalize various cultures. Research and casual observation actually support that idea. Polyglots know, for instance, that one does not think alike in various languages. A Frenchman does not think like a German. One is holistic, the other is methodical. These differences carry over to how we solve problems. Some cultures are analytic and reductionist, others are intuitive and associative. No single approach is better, but, depending upon the problem, some may be more appropriate. People steeped in multiple cultures can access a broader set of problem-solving pathways and pick one that best fits the situation at hand.There are other reasons that put immigrants at an advantage when it comes to innovation. They are apt at challenging norms and authority, and prone to act when unhappy with their lot. With their accents and customs, they never quite fit in, and are used to being different and operating from the margin. They are also at ease with disruption, which is part and parcel of being an immigrant. Like entrepreneurs, they have a tolerance for risk, and a bias for action.  And they top that with a relentless drive to succeed because they can never be completely mainstream.Research also shows that immigrants have an uncanny ability to function in multiple worlds at the same time. They often grow up speaking one language at home and a different one at school, and they sometimes must learn several languages as their parents change countries to flee war or persecution. Those who become scientists retain the agility to move back and forth between multiple domains. They are boundary crossers, with interest and expertise in multiple disciplines, but operating preferably at their interface. They are not biologists or chemists or physicists, they straddle the boundaries between these sciences, and can see connections that might elude less versatile scientists. This makes them especially effective problem-solvers. They think differently, can approach problems from various angles[...]

Look Who's Talking at Partnering for Cures 2013


Remember to visit us on our new blog: www.fastercures.tumblr.comPartnering for Cures is a meeting focused on innovation, science, and collaboration. It is a platform for big ideas, transformative programs, and tangible results brought forth by some of the most disruptive innovators of our time.A shared sense of urgency binds together meeting participants, because we all know that when it comes to the search for cures, "soon" is just not good enough.JOIN US! Look who's talking at #P4C2013Confirmed speakers » Panel topics »  Partnering for Cures emphasized the urgency that time is lives... We have to be willing to approach [challenges] in a different way to get solutions." – Academic scientist  It's a place to challenge conventional thinking."  – Start-up company executive  [Partnering for Cures] is the biggest gathering of patient advocacy groups, biotech companies, pharma companies, and regulators."  – XconomyHave you registered yet? »[...]

Evaluating “Value”: How Do We Foster Innovation in Today’s Cost-Conscious Healthcare Environment?


Two out of three participants in a recent FasterCures workshop believe that patients’ needs and priorities are not driving decisions made by payers, innovators, and providers. To have a stronger grasp on the role the patient can and must play in reimbursement decisions, FasterCures and the Cystic Fibrosis Foundation convened a one-day multi-stakeholder workshop earlier this month titled, “Value and Innovation: What Will the New Day Look Like for Patients?”Fifty-three leaders participated from across the four Ps – venture philanthropy patientorganizations from TRAIN (the Research Acceleration and Innovation Network), biotechnology and pharmaceutical company executives, payers (public and private), and provider organizations.Anchoring the day-long conversation, the first of five sessions focused on the stakes for patients in a cost-constrained environment, and how patients and their advocates can help shape the dialogue and decisions about who will pay for development of new treatments and rising healthcare costs. An overview of the Affordable Care Act followed, providing important context to the conversation about curbing health care costs. Next, the group focused on resources and infrastructure for research being created by innovative patient foundations – and how these groups are doing more and more to transform both the path toward cure and care for their disease. The fourth session looked into the types and sources of evidence payers use and are looking for to make informed reimbursement decisions. Finally, participants dug into the meaning of the term “value” and how new payment and delivery models are driving the definition of value and affecting innovation.Five themes surfaced during the dynamic discussion:Patient-relevant outcomes will ultimately drive the definition of value: Patient engagement in all stages of drug and device research and development, care delivery and payment decisions is vital. Determining and measuring outcomes that are important to patients is an emerging area of research and practice that will require experimentation and refinement.Innovators and patients need to understand the evidentiary needs of payers: Defining what evidence is needed and collecting it at the earliest possible point can help drive toward a shared understanding of value across all stakeholder groups. High quality evidence is needed to make regulatory and payment decisions and will ultimately be generated through both traditional and novel study designs and analytical methods.Better data is needed to make better decisions: A lot of data and information is being collected and stored from multiple sources across multiple platforms. Agreeing on standards and facilitating stronger interoperability would enable sample sizes to grow and better evidence to be harvested for the benefit of all stakeholders.All stakeholders agree that it’s imperative to remove waste from the healthcare system: Up to 50 percent of healthcare delivered is of uncertain value and this uncertainty impacts all stakeholders. Cost pressures can force payers into the uncomfortable role of being “watchdogs” for quality and the evidence available to make decisions is uneven and may be applied inconsistently by different payers in the system.The concept of value is derived from the total cost of a patient’s care, not the cost of an individual product: There is a strong need to unite sources of information about costs of care delivered in different settings by different providers, including family caregivers, and to identify means to calculate savings achieved through prevention and avoidance of harms. Costs of individual products are important but not sufficient to inform decisions about effective care to achieve better health outcomes for the individual and the broader population.The call to cut waste out of the health care system and streamline the process of finding, delivering, and payin[...]

Science, Cures and All the Stuff In Between


by Margaret AndersonReblogged from the Huffington PostThe outlook for science has never been brighter -- we know more today than ever before about the molecular basis for thousands of diseases that impact millions of patients -- but the outlook for funding has also never been bleaker. With the National Institutes of Health losing a billion and a half dollars to the sequester, traditional investors retreating from early-stage life sciences, industry pipelines shrinking, and philanthropy unable to fill the gap, we are poised to leave a huge scientific opportunity on the table, namely our ability to get important new medicines out of the lab and to patients more quickly. And with millions of lives hanging in the balance, it's just not something Americans can afford to do.FasterCures hosted over 100 congressional staffers, patient advocates, academics and drug developers at a Capitol Hill briefing about the importance of federal support for translational research, the phase of medical R&D between the birth of a basic scientific discovery made in the lab and when a pharmaceutical company tests out a potential new therapy with patients -- or, more plainly put, "the stuff in between" microscope and marketplace."If there is anything I believe can bring this nation together for a cause, it is finding cures for disease," said House Majority Leader Eric Cantor in his opening remarks. "We ought to be about research regardless of political leaning, because it is an investment that yields tangible returns for our country." In an environment where Congress is laser-focused on coming up with ways to spend dollars more wisely, his advice to advocates was to emphasize the following message to policymakers:It is good to be about cures. Disease touches us all, and as compassionate humans we should all care about improving and saving lives.It is good for the economy to invest in research. This leads to job creation and global competitiveness.It is a good way to bend the cost curve of health care. We have mounting deficits and debts, and we should prioritize the allocation of funds to areas like this that have the greatest impact."This is really an engineering problem," said NIH Director Francis Collins. "It's about taking a pipeline that is too long and too leaky and fixing it." With each new therapy that comes to market taking up to 15 years to develop and costing over $1 billion, it's more challenging than one might think to successfully navigate the translational stage. There is great momentum in science, and we are poised to start solving several of these problems, particularly with the existence of the new National Center for Advancing Translational Science (NCATS) at NIH, but if we don't continue to invest, we risk losing not only time and lives but a significant driver of economic health."NCATS is a unique new entity, purpose-built to solve this central paradox: that we know more than ever before about how the body works and what goes wrong in disease but lack the equivalent ability to fix it," said NCATS director Chris Austin. "We're designed to be perpendicular to how the rest of NIH works, and to focus not on what's different about disease but what is common." He went on to describe the institute as a biomedical equivalent to the Internet, focusing not on creating companies or products but on allowing people with ideas to share them in a more productive way, and de-risking investment by other sectors in this translational space.Both Collins and Austin said that there is no better time to pursue translational research. Today, we know the molecular causes behind 4,500 diseases, yet there are drugs available to treat just 250 of them."We are operating on hope, not hype," said Sharon Terry of the Genetic Alliance. "The network solutions that have overtaken other industries and streamlined them are finally starting to hit the biomedical research space, and we can't afford to lose momentum." She specifically referenced networked[...]

Medical research investment: an opportunity for bipartisanship?


By Cecilia Arradaza, Director, Communications and Policy, FasterCuresMay 29, 2013Photo courtesy of the NIHA few weeks ago, House Majority Leader Eric Cantor led a bipartisan group of members to the National Institutes of Health campus to learn more about their work, but also to discuss the future.  Reps. Earl Blumenauer (D-OR), Michael Burgess (R-TX), Renee Ellmers (R-NC), Eliot Engel (D-NY), Chaka Fattah (D-PA), Andy Harris (R-MD), Tim Murphy (R-PA), and Ted Yoho (R-FL) joined the Majority Leader.  Cheryl Jaeger, Megan Whittemore, and Matthew Zackon of Leader Cantor’s office and Karen Summar of Rep. Cathy McMorris Rodgers’s office also participated.Photo courtesy of the NIHSeeing is believing – walking through the NIH Clinical Center, the crown jewel of our nation’s research framework, provides you not only with hope for the future but a real sense of optimism that science matters and that it can make a difference in our lifetime. So to see our Members of Congress carve out time to visit the NIH provides the medical research advocacy community with great hope we can reaffirm our commitment to the biosciences.At the Milken Institute Global Conference, on a panel with Senate Majority Leader Harry Reid and FasterCures founder Michael Milken, Leader Cantor said that “[we] believe that science should be a priority.” He added that he “hopes when [the Congress] gets to the point where there are issues that seem insurmountable, let’s go ahead and try and practice doing things together so that we can get some things done.”He then cited the creation of the National Center for Advancing Translational Sciences (NCATS), as one of the demonstrable results of him working closely with Leader Reid. “Harry, when you and I did NCATS, it was a great example I think of the ways that we can work together without a lot of fanfare and just practicing and putting points on the board, and maybe we can work our way towards larger goals after that.”Cantor then alluded to the May 9th bipartisan trip to the NIH that he was organizing. “Not only will we spend a couple hours together one afternoon in Washington, but also perhaps learn something together we can practice trying to solve problems together,” he said.During the panel discussion, Leader Reid concurred with Cantor’s statement on the critical importance of supporting science and noted that “if we’re going to make progress in some of the dreaded diseases we have, we have to step up as a federal government to do that. It’s going to take us working together to fund these programs so that our great scientists can continue doing what they know needs to be done. And we can’t do it on the cheap.”Investing in our nation’s medical research infrastructure is an investment in our future.From a dollars-and-cents vantage point, consider the economic payoff of the Human Genome Project: the U.S. government’s $4 billion investment in the Human Genome Project spurred an estimated $796 billion in economic growth from 2000-2010—a 141-fold return on investment, after adjusting for inflation.And, we are living longer, more productive lives, due in large part to research advances that started at the NIH. For example, U.S. death rates from heart disease and stroke have fallen more than 60% in the last half-century.The case for investing in science and medical research is clear. To punctuate this point, let’s turn to the cost of inaction. Well –talk to the brilliant PhD with bleak prospects for a career in science…talk to the employer who has lost his or her most productive and talented staffer because that person had to instead become a full-time caregiver…talk to the patient who just walked out of the doctor’s office after having been diagnosed with a debilitating disease for which there are no cures or meaningful treatment options…Point punctuated.Now to further underscor[...]

FasterCures Congratulates Marilyn Tavenner’s Confirmation as Medicare/Medicaid Chief


by Margaret Anderson, Executive Director, FasterCuresPhoto courtesy of Yahoo NewsFasterCures congratulates Marilyn Tavenner for her confirmation as administrator of the Centers for Medicare and Medicaid Services (CMS), an $820 billion agency that oversees the bulk of federal healthcare spending and healthcare reform.Tavenner is the first confirmed administrator for the agency in more than six years, backed by an overwhelming 91-7 vote in the Senate. Such demonstration of bipartisan support underscores the importance of having strong and sustained leadership of an agency that plays a vital role in determining the fate of the U.S. healthcare infrastructure.CMS oversees Medicare, Medicaid, children’s health insurance, and implementation of many of the provisions of the Affordable Care Act. Decisions made by CMS impact not only the way we reimburse for costs associated with healthcare delivery, in so many ways, these decisions also determine what therapies patients can access today, and what therapies might move down the path from the laboratory bench to the patient’s bedside.And that’s why at FasterCures, we’re particularly paying close attention to the role CMS and other payers could and should play in advancing innovation in research and development. We continue to work closely with all sectors of the medical research ecosystem to explore effective ways to engage payers into the R&D process whether it is through a discussion of what data sets are relevant to reimbursement decisions, or a broader conversation about the role that reimbursement will play on decisionmaking at biopharm companies as they decide therapeutic discovery pathways.Tavenner has a long to-do list ahead and we commend her commitment to strengthening the agency to improve health outcomes for patients, make our health care delivery system more effective and efficient, and ensure the best possible therapies can be made available to the right patients at the exact time they need it.We stand at the ready, Administrator Tavenner, to support you and CMS.[...]

Science takes center stage at world's top finance conference


Make sure to bookmark FasterCures’ new tumblr for more 2013 Global Conference posts and to keep on the pulse of the latest innovations in the medical research ecosystem.

One woman’s fight to find cures for neuroendocrine cancer


Time=Lives Story of the Week: Catherine Cooling DavisCatherine Cooling Davis is 28, newly married, getting her MBA, and living with metastatic neuroendocrine cancer. But, she’s not letting this life-threatening diagnosis stop her from being her own best advocate in the face of uncertainty.Neuroendocrine tumors (NET), most recently in the news as the type of cancer that killed Steve Jobs, is slow-growing and can begin anywhere in the body that has neuroendocrine cells. Although these cells exist throughout the body, NET are most commonly found in the gastrointestinal tract and lungs. More than 11,000 people are diagnosed with NET each year – a number that is growing by five percent annually. Medical research is important when it comes to NET because most patients are only diagnosed in the late stages of the cancer once it has metastasized. In Catherine’s case, her diagnosis didn’t come until her cancer was in stage four, forever changing her busy life. However, faced with endless appointments with a series of doctors, Catherine knew she had to take her treatment into her own hands. “Since my diagnosis, I have traveled to meet specialists all over the country,” she said. “They have no better idea what to do with me than I know what to do with myself. Each of the specialists has a strategy, none are the same, and all say that the other doctors' strategies are also not wrong.” "As terrifying as it is," she says, "I have to be my own best advocate. I have to choose the medical plan that I feel is best for me."Catherine chose to have surgery to begin removing multiple tumors from her liver. In addition to this, she is searching for answers to many of her unaddressed questions. “I don't know how long I can live with this disease. I don't know how fast it is growing, how long I have had it, or how long I will continue to feel as good as I do,” said Catherine. But, she has hope. She believes a potential cure for this deadly cancer has been developed but sits idle in a research lab at Uppsala University because it cannot currently be patented by the company that owns it. So, Catherine and her friends and family began fundraising to provide money and support for the researchers to take the drug into phase 1 clinical trials. To read more about Catherine’s story, visit Let’s Cure Neuroendocrine Cancer, or visit Catherine’s Time=Lives story page. [...]

Using electricity to get the blood pumping


Time=Lives Story of the Week - Fred StreitzAs director of the Institute for Scientific Computing Research at Lawrence Livermore National Laboratory, and director of the High Performance Computing Innovation Center, the technology Fred Streitz is working on everyday has the potential to save lives. Through the use of high performance computers, Fred and his team have developed a new code called Cardioid, which mimics the electrical currents that naturally make the muscles of the heart pump blood throughout the body.Watch Fred's Time=Lives story here.We met up with Fred at last fall’s Partnering for Cures when he presented Lawrence Livermore’s collaboration with IBM Research and learned more about its opportunities for biotech and pharmaceutical companies that offer on-demand access to computation expertise running on high-performance computers.Researchers at the Lawrence Livermore National Laboratory took on this project to saves the lives of those with heart arrhythmias and other heart complications. When the natural electrical system within the heart malfunctions, it can cause an arrhythmia where blood flows irregularly to the body. As a result, more than 325,000 people die each year in the U.S. from this condition. Fred, who earned a Ph.D. in Physics from the Johns Hopkins University and a B.S. in Physics from Harvey Mudd College, is a leader in High performance computing at Lawrence Livermore National Laboratory, which specializes in combining advanced science with biomedical research in an effort to strengthen national security and contribute to the major medical issues facing the US. “People’s lives are at stake,” said Fred. “Every time a cure doesn’t work, or a cure gets delayed for lack of funding, experience, or scientific background, those are lives that are at stake.”Fred’s work at Lawrence Livermore is a great example of the power of technology and innovation to change the healthcare and medical research industries. Just last week, President Obama announced his support for BRAIN (Brain Research through Advancing Innovative Neurotechnologies) a radical national initiative which allows us to "better understand how we think and how we learn and how we remember," said the president. Additionally, the promise of whole genome sequencing is also leading to rapid new discoveries enabled by a decrease in cost and increase in availability.Check out more stories from researchers like Fred on Time=Lives.[...]

Imagine the possibilities if we could only read your mind…or at least map your brain


"Imagine if no family had to feel helpless watching a loved one disappear behind the mask of Parkinson’s or struggle in the grip of epilepsy.  Imagine if we could reverse traumatic brain injury or PTSD for our veterans who are coming home…,” said President Barack Obama last week as he laid a grand, ambitious new government initiative to map the brain.Obama said he will ask Congress for $100 million in 2014 to support the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) initiative which allows us to "better understand how we think and how we learn and how we remember." Three government agencies will be involved: the National Institutes of Health, the Defense Advanced Research Projects Agency and the National Science Foundation. “It's an audacious, bold idea,” said Francis  Collins, director of the NIH. "To understand how the human brain works is about the most audacious scientific project you can imagine," he said. "It's the most complicated structure in the known universe."In many ways, this initiative is similar to the Human Genome Project which Collins led and completed in 2003, in its vision and ambition. But, unlike the Human Genome Project, the BRAIN initiative has not laid out its primary scientific goals. The lack of detail is worrying BRAIN skeptics and advocates alike. Some scientists were quick to question the motives behind this initiative, noting that a lot of great research on the brain is already underway.” At a Q&A segment  following the President’s announcement, Collins said that these details would be hammered out by a “dream team” of 15 scientists who will hold their first meeting at the end of the month. This team is led by Cori Bargmann of Rockefeller University and William Newsome of Stanford University, will be charged with coming up with a plan, a time frame, specific goals and cost estimates for future budgets.Additionally, Obama addressed how this initiative can drive growth and create new job opportunities. As the “rest of the world” is racing ahead in the quest for innovation, he expressed concern that we will lose a new generation of scientists because of uncertainty in research funding. We can’t afford to miss these opportunities, he said. The President called on companies, research universities, foundations, and philanthropists to get involved.What we took from sitting in the room with the leaders and innovators in science and research as the president spoke about the promise and potential of this new initiative, was a broader message about the power and value of investing in science, and the important role the federal government plays in ensuring scientific breakthroughs can improve health.  We took such enthusiasm and energy as our cue to be more determined than ever to advance medical progress.Upcoming MilestonesAs part of this planning process, input will be sought broadly from the scientific community, patient advocates, and the general public.The working group will be asked to produce an interim report by fall 2013 that will contain specific recommendations on high priority  investments for Fiscal Year (FY) 2014.The final report will be delivered to the NIH Director in June 2014. Key Resources:Remarks by the President on the BRAIN Initiative and American Innovation, April 2, 2013Video of Remarks by NIH Director Collins and the President, April 2, 2013Fact Sheet: BRAIN Initiative(, April 2, 2013Video of Open for Questions with NIH Director Francis Collins(, April 2, 2013 WhiteHouse.Gov Blog: BRAIN Initiative Challenges Researchers to Unlock Mysteries of Human Mind, April 2, 2013 [...]

Time=Lives Story of the Week: Sienna Otto


“Sienna can’t plant a flower, or skip, or twirl like a ballerina, or even hold her mom’s hand when they walk. But since Sienna can’t plant a flower herself, we’re going to do it for her…and in doing so, we’re going to save this little girl’s life.”Fibrodysplasia Ossificans Progressiva or F.O.P. is an extremely rare genetic disorder where bone forms unexpectedly within muscle and other soft tissue. Over time, this can cause joints to lock-up and leave them unable to move. So, F.O.P. is often referred to as “stone man syndrome.”Although two-year-old Sienna Otto was diagnosed with F.O.P. in 2012, neither Sienna nor her family have let this rare disorder affect their positive outlook on life. Sienna loved to plant flowers outside with her parents, however, F.O.P. makes it impossible for her to lean down to the ground and kneel to the grass. So, with the help of their friend Natasha Lam O'Rourke and her Boston-based advertising agency, Connelly Partners, Sienna's family started Sienna’s Flower Garden (@CureSienna), a virtual garden where each donation is recorded as a digital flower. All funds go towards finding a cure for F.O.P. for children like Sienna. Watch Sienna’s Story Here According to the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), only 1 in 2 million people have F.O.P., and there are less than 200 confirmed cases in the United States. Three principle researchers and 15 fellows, students, and assistants make up the only dedicated F.O.P. research lab in the country at the University of Pennsylvania. Approximately $1.5 million dollars is spent on research each year - 75 percent of which is comprised of family and patient fundraising and donations.  Unfortunately, F.O.P. is typically misdiagnosed by doctors because it is so rare. Misdiagnosis of the disease leads to greater pain and suffering of patients because unnecessary biopsies or other tests cause the body to create more bone rather than regenerate tissue. To date, Sienna’s Flower Garden has raised more than $50,000 and continues to be an important resource for families and patients. There are nearly 7,000 rare diseases affecting ~30 million Americans, which means almost one in ten Americans is suffering from a rare disease.  Traditionally, rare disease research has been relatively siloed, with limited communication between and across research organizations. However, increasingly patients, their families, and the disease-specific organizations that serve them are starting to work together towards the ultimate shared goal of finding cures.See more stories about the power and promise of medical research to improve and save lives, and tell us why it matters to you. Visit FasterCures’ Time=Lives campaign for more information.[...]

Diving deeper into healthcare costs and breakthroughs


By Shawn Sullivan, Program Associate, FasterCuresOver the past few weeks, Washington has been consumed by conversations about the federal budget. Two recent events we attended, a Center for American Progress discussion and a Congressional Neuroscience Caucus briefing, aimed to cut through the rhetoric and focus on specific aspects of health funding – the affordability of healthcare and the relationship between mental illness and violence. The March 13 Center for American Progress discussion, “The High Price of Healthcare,” featured the journalist and author Steven Brill, who wrote the recent TIME cover article “Bitter Pill: Why Medical Bills Are Killing Us.” The conversation covered the excessive number of healthcare services and exorbitant prices, as well as reforms to control healthcare spending. “[Brill’s article] has changed the entire conversation surrounding healthcare,” said panelist Giovanni Colella, CEO and co-founder of Castlight Health. “It takes the issue to where the real problem is. This is an industry where the entire incentive system is wrong. We don’t know what we are paying, what we are buying, or what the outcomes are relative to costs. That would never fly in any other industry. Imagine paying for a Ferrari and getting a Toyota.”While much of the debate about the Affordable Care Act has focused on who is responsible for paying for healthcare, Brill pointed out that there isn’t as much focus on the actual costs: “During the debate over Obamacare, the questions being asked were about who pays for healthcare, when the question should have been ‘why does it cost so much?’”The March 18 Congressional Neuroscience Caucus briefing examined the critical topic of mental illness and violence, as well as the state of mental health services and programs in the United States and scientific breakthroughs on the horizon that can benefit the 60 million Americans who suffer from mental illness. “There are two parallel conversations going on right now,” said Thomas R. Insel, director, National Institute of Mental Health. “One is about taking a fresh look at policy dealing with gun violence due to the recent tragic events at Sandy Hook, and other places. The other, due to things that have happened in only the last few months, is about revolutions taking place in brain research. President Obama mentioned mapping the brain in his recent State of the Union Address. But nobody is bridging these two conversations. If we want to prevent more Sandy Hooks, we have to do more about brain research.”Elizabeth Childs, child and adolescent psychologist and former commissioner of the Massachusetts Department of Mental Health, emphasized the importance of funding mental health research in tough economic times: “I am well aware of the challenges you face here in Washington to balance our budget, but there are investments worth making. Underfunding of the National Institute of Mental Health does not move us in the right direction. The reality is that the lack of investment in mental health is far more costly in the long run, including the increased burden that untreated mental illness has on the nation’s education, public safety and corrections systems. And that is before we factor in the incalculable human cost to families and our society.” These conversations about the unique aspects and critical impact of federal health funding are pivotal to our nation’s well-being and productivity. As these conversations continue, we must focus on the real-world impact of policy decisions on patients, families, and communities nationwide.[...]

Time=Lives Story of the Week: Sarah and Adam Foye


Kids, DNA and Genetic TestingAdam Foye, a New-Jersey sixth grader, has lived much of his life with weak muscles and uncertainty. Although his symptoms match most closely with the rare muscular disorder, Centronuclear Myopathy (CNM), his genes tell a different story. The 11-year-old’s tests show no issues with the genes that indicate CNM. Adam’s mother, Sarah, said in a recent TIME story, “it has taken a very long time to get no answers.”Check out Sarah’s Time=Lives story here.Last year, Adam was one of three children to take part in a competition sponsored by Boston’s Charity Hospital called the Children’s Leadership Award for Reliable Interpretation and Appropriate Transmission of Your Genomic Information, otherwise known as CLARITY. More than 20 teams of international researchers competed to analyze Adam’s genetic sequence in comparison with someone who does not have CNM and translate the results into easily ready and interpretable information for patients, families, and doctors. The winning team, the Division of Clinical Genetics at Brigham and Women’s Hospital in Boston, took home $15,000 for their combined “analysis, clarity, and utility” in their reports.Whole genome sequencing’s ability to provide key information for many currently unanswered medical questions holds great promise for the future of the healthcare industry overall. The process, which used to be priced in the billions, has dropped in cost and thus increased accessibility. However, questions still loom regarding what doctors and patients should do with their data, how that amount of data should be stored, and what guidelines need to be established to regulate the process. All of these issues need to be addressed before whole genome sequencing can be used with any regularity.For the Foye family, it was discovered that Adam’s gene that encodes for the Titan protein is malfunctioning. Titan serves as spring in the muscle to help with contraction and expansion. Although there still is no cure for this problem, the Foyes are hopeful. “As my husband says,” notes Sarah in the TIME piece about the results of the competition, “this is not our final destination on our medical journey, but it’s an important milestone. Now we want to work toward a treatment.”For more information on the CLARITY competition, watch: And for further information about the potential uses of whole genome sequencing, read Gina Kolata's excellent t three-part series on the topic in the New York Times (links below).Additional stories about the power and promise of medical research to find cures and save lives can be found on the Your Stories page of our Time=Lives campaign. Check out the site to find out what you can do to help make medical research a national priority.  After all, we’ll all be patients someday.Gina Kolata's Three-Part Series on Whole Genome Sequencing in the New York Times[...]

Tools of Engagement: Building patient-centered research networks


By Kristin Schneeman, Program Director, FasterCuresEngaging 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 and Registries for All Diseases.Dana Ball, CEO of the T1D Exchange, began by saying that after much due diligence about where the barriers and inefficiencies were in research and care for Type 1 patients, the Helmsley Charitable Trust set out to create an end-to-end solution to connect the R&D and healthcare enterprises with the patient resources necessary for all to succeed. What it has built in the T1D Exchange is a national network of 69 clinics treating 100,000 T1D patients, a 26,000-patient registry, and a 1,000-patient “living biobank” (i.e., samples are collected to answer specific questions). Integral to the network is Glu, a social network through which the Exchange is collecting valuable patient insight via surveys and discussions and which serves as a “real time access point for community-driven research using an innovative mobile platform.” With all these tools, the Exchange can share patient data, recruit patients, and collect samples quickly. Ball noted that absolutely critical to the success of the entire Exchange is a carefully constructed universal consent from patients.The Exchange is meant to be self-sustaining. Ball noted that it provides products and services to academic and industry researchers and insisted that these are not “dirty words” for a nonprofit. “We think of ourselves as a high-quality CRO [contract research organization],” he said, with a unique trust relationship with the patient community. Another element of the sustainability model will be a new nonprofit company called Unitio, to be launched mid-year, which will license the platform the Exchange has created on reasonable terms to other disease groups. Ball noted that none of this would be possible without philanthropic support – no other single sector has the incentives to do this work. He was passionate about the need to educate philanthropists about how to invest for impact – the need for resources to hire good people, to create infrastructure that facilitates the whole enterprise but that others won’t create.Sharon Terry followed with a presentation about Registries for All Diseases (Reg4All), which 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. Terry began by noting that while recruiting appropriate patients for trials is viewed as “finding a needle in a haystack,” in fact “the haystack is made of needles” – we are all potential trial participants and just need the engagement, education, and trust to get on the information highway.Reg4All is an evolution of work that Terry and Genetic Alliance have been involved with for a number of years that continues to widen in scope and sophistication. It is built on the platform of DiseaseInfoSearch, a database that provides disease-specific information and resources about 13,000 different diseases. Reg4All is not a disease-specific registry but rather a platform for individuals to enter self-reported medical information via a “gamefied survey” – and eventually to import clinical data from elect[...]

Technology Entrepreneurs Unite at SXSWi


By Lauren Fliegelman, FasterCures InternEarlier this month the city of Austin, Texas played host to the best and brightest technology entrepreneurs at the interactive portion (SXSWi) of the South by Southwest (SXSW) 2013 conference and festival.  A magnet for startup companies looking to make an impact, it brought together a wide range of breakthrough IT innovations – some of which have the potential to make waves in the healthcare and medical research industries. FasterCures was not there in person, but we watched the events unfold from afar and were quite enthused by some of the things we saw.TrendsTrending topics at this year’s event included the potential of 3D printing to revolutionize U.S. manufacturing and product design. Already, examples of the use of 3D printing can be seen in the orthopedic industry. Earlier this month, Oxford Performance Materials demonstrated how this technology is able to replace 75 percent of a patient's skull, with the approval of U.S. regulators, using 3D-printed implants that take the place of bone damaged by disease or trauma. Several discussions at SXSWi addressed this technology and explored its continued development, practical applications, and safety implications. Additionally, the “Quantified Self” movement – a trend towards collecting health data from our bodies in real time and tracking its impact on our overall wellness – was a highlight of the week. The case for collecting  big data has been made in previous years at SXSWi, however, more advanced wearable technology has since been developed allowing each and every one of us to record and measure our everyday bodily functions – from fitness impact to sleep quality to metabolic  performance – allowing for greater analysis and insight.Technologies of noteThe newly formed Neurotrack was the winning healthcare startup at the event. Neurotrack’s work towards earlier Alzheimer’s detection is rooted in 25-year-old research from neuroscientists at UC San Diego. Its test can now identify those at risk for Alzheimer’s disease six years before the onset of symptoms, which is traditionally when an initial diagnosis is made. CEO Elli Kaplan said that 100 percent of those who scored lower than 50 percent on the test went on to develop Alzheimer’s disease.Higi, a medical screening startup, had its own lounge at the event where Higi Stations, which measure different aspects of your health and give you a score out of 999, were readily available for use. A higher score means better physical, mental, and social health. The Higi philosophy is that many of the US’s major health ailments such as obesity and diabetes could be cured through prevention. According to the company, if you know more, you’re more likely to do more. Armed with their score, people have the ability to make significant changes in their lives.Other cool stuffOther notable mentions from the conference included Highlight, an app that alerts you when people with similar interests are nearby, the Memoto “life blogging” camera, that clips on to a shirt or jacket and snaps a photo every 30 seconds, and Leap Motion, a small device that allows you to control your computer by the wave and motions of your hand rather than a mouse or track pad.For more information on SXSWi 2013, and to see a list of guest speakers and participants, visit[...]

Time=Lives Story of the Week: Jessica Foley


Encouraging the next generation of scientists“What motivates me is working in a field where every day it's changing, it’s challenging, and it’s exciting.”Meet Jessica Foley. She’s the Scientific Director at the Focused Ultrasound Foundation (FUSF) and a long-time advocate for greater use of the focused ultrasound, a revolutionary technology that allows for the treatment of numerous diseases without the danger of invasive surgery or a lengthy recovery time.Watch Jessica’s story here.Currently, MR-guided focused ultrasound surgery has been approved by the U.S. Food and Drug Administration (FDA) for the treatment of uterine fibroids, and has obtained CE-mark approval in Europe for uterine fibroids and pain from bone metastases.  However, the possibilities for this technology are countless - with ongoing clinical trials for breast tumors and brain tumors, and plans to begin additional research into it's impact on several other kinds of tumors, stroke, and epilepsy. For over 12 years, Jessica has had a rich career as a scientist and researcher in this novel field. Before joining FUSF, she worked with InSightec and Medtronic, and also served as a 2011-2012 AAAS Science and Technology Policy Fellow at the National Science Foundation.We met up with Jessica at last year’s Celebration of Science to talk about what she envisions for future generations of scientists and researchers and the challenges they may face with today’s economic shortcomings. She emphasized the need to elevate the role of science in our society so we can attract and engage tomorrow's innovators."Years ago [the public] seemed to get it," said Jessica, who holds a Bachelor’s in Biomedical Engineering from Duke University and a PhD in Bioengineering (emphasis in focused ultrasound) from the University of Washington.  "And maybe not everyone gets it now, but I hope that through all sorts of projects we're trying to work on we can get to that point again where kids want to grow up and be scientists and engineers."To learn more about the Focused Ultrasound Foundation visit make sure to check out the TIME=LIVES campaign for more stories about the power and promise of medical research, and to help spread the message that research matters and needs to be a national priority.[...]

The long-term effects of sequestration on medical research


“I worry about the treatments that we’re not going to discover as a result of these cuts. 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.” - Margaret AndersonLast week, FasterCures Executive Director Margaret Anderson 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 appealed. Watch the whole segment here. Anderson was joined on the Sunday, March 10 segment by Lynn Marquis, Director of the Coalition for the Life Sciences, who talked about the effects that these cuts will have on the scientific workforce.“We’re going to lose an entire generation of scientists moving forward,” Marquis cautioned. “We’re already not seeing kids pursuing scientific careers because there is no future for them.”Though optimistic about the possibility to reverse this alarming trajectory, Anderson and Marquis warned that medical science is an area in which the United States cannot afford to fall behind.  They emphasized the outsized impact that investments in research have on both human health and the health of our economy, and noted that it is hard to compare these types of cuts with others.“This is a powerful investment in the future - for patients, for the economy, for jobs, for industry. I don’t think it’s the same as cutting other programs,” Anderson said. Marquis agreed and offered a bit of hopefulness, “I think we see from both Republican and Democrats…there is huge support for NIH’s biomedical research, primarily because of the human health and economic benefits that we reap from our investment.”So if Congress understands that medical research is vital to the future of our country, what can be done to ensure we don’t lose our preeminence in the life sciences?Anderson thinks there’s hope for the NIH to avoid budget-desolation. “I’m an optimist. I think that people need to speak their mind to their members of Congress about how they feel about this investment.” She also spoke about the power of team science and cross-sector collaboration in moving promising research from lab to patient faster.Just this year, NIH will be forced to reduce its spending by $1.6 billion, significantly slashing the United States’ ability to fund basic scientific research.  Yes, that’s billion with a capital B. Devastating to the medical research community – and more importantly, to the hundreds of thousands of patients suffering from diseases for which there are no cures and few treatment options – does not begin to describe the impact of sequestration.What Can Be Done?Contact your Members of Congress and let them know that further cuts to the NIH and FDA will set us back on the path to new therapies and cures for disease, jeopardize our economic competiveness, and result in job loss in communities throughout our country. Share with them why a strong investment in medical research is important to you, your family, and your community.Submit your story about why medical research and protecting funding for new research matters to Time=Lives.Attend the Rally for Medical Research on April 8th here in Washington, DC. Even if you can't attend, check out their site for more way to get involved![...]

Building a culture of participation in research


By LaTese Briggs Program Analyst at FasterCures“I have been waiting 174 days to say this: 'Good Morning America.' " IDA MAE ASTUTE/ABCGood Morning America anchor, Robin Roberts, made her triumphant and long awaited return to the talkshow last month after a five month recovery from a bone marrow transplant to treat myelodysplastic syndrome (MDS). The show and her fans have been celebrating and supporting Roberts’ through her courageous fight and recovery. An emotional Roberts’ thanked her fans, colleagues, and doctors for helping her through her battle with the disease, but she also took the time to thank all of the courageous people that participate in clinical trials.“The standard treatments of today are developing because patients before you participated in clinical trials, and in a certain sense it’s our obligation as physicians and the patients of today to develop the standards of care for the patients of tomorrow.”By participating in clinical research studies, these giving volunteers play a key role in improving the standard of care for themselves and future patients. Clinical trials are critical to bringing new drugs and interventions to patients in need. In a recent editorial by Francis Collins, Director of the National Institute of Health (NIH), he explains that the wealth of discoveries related to the genetic and environmental causes of disease, have led scientists to numerous new targets for drug development; however, the rate at which new drugs and other therapeutics are reaching patients has not increased proportionately. A key impediment to the translation of these discoveries to new treatments is the poor participation rate of Americans in clinical trials. This problem has been well-demonstrated in cancer where according to the NIH, only 3% of adults with cancer are participating in clinical trials. According to studies conducted by CenterWatch, 94% of Americans recognize the importance of participating in clinical research in order to assist in the advancement of medical science; however, 75% of Americans state they have little to no knowledge about how clinical trials work and the participation process. This staggering statistic highlights the need to raise clinical trial awareness among the general public. Even small efforts like a simple thank you to clinical trial participants from a beloved morning show anchor, can have a major impact on achieving this goal. Thus involvement from the media and high profile individuals to illuminate the importance of clinical trials can be used as a powerful tool to educate the public on the link between improvements in healthcare and clinical research.Educating patients and non-patients alike has become infinitely easier with the advent of online registries and databases. Sites like help doctors, patients, friends, and family members find clinical trials soon to be conducted in their area, their specific disease or a find a call for a person with a particular medical history.The involvement of patient advocacy groups has also proven to be an effective way to increase clinical trial awareness and patient enrollment. A good example of this is the Love/Avon Army of Women collaboration between the Dr. Susan Love Research Foundation, the Avon Foundation, and the American Association of Cancer Research. The goal of this initiative is to recruit one million women willing to donate time, biospecimens and data to breast cancer research. To date, the organization has recruited nearly 400,000 women.In addition, the use of outreach workers to educate patients a[...]

Working together towards cures for rare diseases


By Karlee Stewart, Communications Coordinator at FasterCures7,000 different types of rare diseases and disorders          1 in 10Americans suffers from a rare disease                    95% of rare diseases do not have a single FDA approved drug                                        The numbers don’t add up.“Take on the voice that I’m sharing with you today, reach out to your fellow patient advocates who frequently don’t see beyond their own situation and help them understand the bigger systematic challenges we all face.” – Hugh Hempel, The Addi and Cassi Fund On February 28, 2013 we joined friends and colleagues in the rare disease community to commemorate Rare Disease Day, the culmination of a week's worth of activities to bring widespread recognition of rare diseases as a global health challenge. This year, we were lucky enough to be a part of a major event here in DC kick-starting the week and celebrating the screening of Here.Us.Now a documentary highlighting the Hempel Family and their struggle to save their twin daughters, Addi and Cassi, who are living with Neiman Pick Type C. To learn more about the Hempel’s journey, check out their Time=Lives story.   The documentary focuses on the pitfalls of an ineffective system for patients with rare diseases who have hit a wall in the search for treatment options or a cure. It features prominent members of the medical research community from academia, pharma, biotech, and patient groups calling for change in this uncommunicative and slow system.Panel moderated by Margaret AndersonFollowing the screening, we heard from National Center for Accelerating Translational Science (NCATS) Director Chris Austin during a panel moderated by Margaret Anderson. “The bad news is that there are at least 5,000 more disease like [Addi and Cassi’s] that when doctors like me see them in the clinic, all you can say is please come back to me when you need supportive care.”Answers are what the Hempels, and others like them, are looking for. However, because rare disease research today is so siloed and disease-specific, communication between groups is limited, leading to occasional duplication of research efforts and time wasted in a world where there’s no time to waste.“Reach out to your fellow advocates and rally them together for rare disease research,” Hugh Hempel urged the panel’s audience, “We find ourselves fighting over crumbs from funding from the NIH…let’s work together.” Hempel said the biggest issue that smaller, disease-specific groups have is not working together for one ultimate purpose, cures.Besides an insightful talk and plans for collaboration between advocacy groups, here are some outcomes from Rare Disease Week: Reg4All – a “community of people storing and sharing information about ourselves, our health, and our diseases– to improve health and speed therapies across all disease.” An award granted by the Sanofi US Collaborate Innovate challenge that allowed the Genetic Alliance, CFIDS Association of America, National Psoriasis Foundation and the Inflammatory Breast Cancer Research Foundation to build the registry. Boehringer Ingelheim collaboration with PatientsLikeMe on the rare lung condition idiopathic pulmonary fibrosis (IPF.) The partnership will provide “a customized experience for its users that wil[...]

Time=Lives Story of the Week: Blair Van Brunt


“Patient participation is really critical in terms of reaching for a cure, the word that nobody wants to mention by the way.”Diagnosed at age 2 with Shwachman-Diamond Syndrome (SDS), a rare disease affecting the bone marrow, pancreas and skeleton that makes it extremely difficult to digest food and fight off infection, Blair Van Brunt’s daughter Gracie was lucky to have her biggest advocate in her corner. With determination to help find a cure, Blair, like many other parents, quickly sprung into action and became an advocate, a cheerleader and an authority on the rare disease that her now 18-year-old daughter fights every day. SDS, which is often confused with Cystic Fibrosis, is normally diagnosed in the first few years of life and slows growth dramatically.After their daughter’s diagnosis, Blair and her husband decided to get involved with fundraising right away. Their continued passion and involvement in the cause eventually translated into Blair’s placement on the board of the Shwachman-Diamond Syndrome Foundation in 2004 and then to her current position as president, a role she’s held since 2008. Founded in 1994, the Shwachman-Diamond Syndrome Foundation is now a national voice and advocate for patients and families with SDS.Watch Blair’s story here.Because there are only around 1,000 cases of SDS in the United States, it is difficult to rally patients together for a clinical trial, Blair explains. “We need to populate the path [to cures] with our data, our stories, and our drive and passion to get all of us to move towards the same goal.”Learning to embrace her disease and fight for others, Blair’s daughter Gracie uses music as both an outlet and a tribute. Make sure to check out her website and listen to some her amazing songs, like Thomas’ Song, a project she’s working on with Pledge Music where 10% of all proceeds will go to the Schwachman-Diamond Syndrome Foundation.To learn more about SDS and the Shwachman-Diamond Syndrome Foundation, visit Or Like their Facebook page.And make sure to check out the Time=Lives campaign to find out what you can do to help speed the medical research process.-- VISIT the campaign Web site-- LIKE the Facebook page-- TWEET with us at #TimeEqLives-- DOWNLOAD and SHARE the Message-- TELL us your story[...]

Time=Lives Story of the Week: Phil Gattone


"There really isn't much logic in sending your child to brain surgery, but we did. Because we knew we were losing him."President and CEO of the Epilepsy Foundation, Phil Gattone, and his wife Jill began the fight for their son Phillip’s life in 1991 after he suffered his first seizure at the age of four that lasted almost an hour and landed him in the emergency room.Watch Phil’s story here“It was a researcher who we probably will never know who helped well before our son started having seizures,” said Phil. “Because of the tremendous efforts of his clinicians and those researchers, there was a sense of hope.” Now in his mid-20s, Phillip is a software engineer at Northrop Grumman Aerospace Systems and is able to effectively manage his epilepsy.According to the Centers for Disease Control and Prevention, epilepsy affects 2.2 million Americans and 65 million people worldwide. Approximately 1 in 26 people in the United States will develop epilepsy at some point in their lifetime, with an aging baby boomer generation reaching retirement age the number of citizens with the disorder is predicted to grow.Advances in treatment for epilepsy have provided a functionally normal life for people like Phillip, but despite how common it is, epilepsy remains one of the least understood chronic medical conditions. While medications and other treatments help many people of all ages who live with the condition, more than a million people continue to have seizures that can severely limit their school achievements, employment prospects and participation in all of life's experiencesResearch is the key to the future for people with hard to control seizures, and the trajectory of epilepsy – and other disease for which there are no cures – depends on attracting the best scientific minds and funding innovative clinical investigation. The science is promising, but without continued support and resources, we risk patients like Phillip falling by the wayside.To learn more about the Epilepsy Foundation and get involved in their work, go to And check out the Time=Lives campaign to find out what you can do to help speed the medical research process by participating in a clinical trial, sharing your story, or simply spreading the message that medical research must be a national priority.-- VISIT the campaign Web site-- LIKE the Facebook page-- TWEET with us at #TimeEqLives-- DOWNLOAD and SHARE the Message-- TELL us your story[...]

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 researchFasterCures 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  [...]

A Clinical Trials System for the 21st Century


By Samantha Mayberry, Program Assistant at FasterCuresLast month, a host of clinical trial and oncology experts at the Institute of Medicine's (IOM) “Implementing a National Cancer Clinical Trials System for the 21st Century” workshop discussed the great strides that have recently been made in the clinical trials space. The workshop, co-sponsored by the Institute of Medicine and the American Society of Clinical Oncology (ASCO), examined how the National Cancer Institute (NCI) has implemented the recommendations put forth in IOM’s 2010 report “A National Cancer Clinical Trials System for the 21st Century” with the goal of both evaluating progress against these recommendations, and identifying any outstanding gaps. A January 2012 ASCO report details much of the progress discussed at the workshop, including the development of a centralized patient registration system amd a clinical trials data management system, as well as advancement in gaining coverage for trials through the Affordable Care Act.  However, the issues that remain clearly demonstrate that the current system is still being built to accommodate science as it was, not as it will be. Specific issues include the fact that many NCI-run trials are not currently equipped for the rapidly-advancing science available in cancer therapeutics, particularly precision medicine, and the need for a clinical trials system run and regulated on an international scale rather than national systems for individual countries.The NCI cooperative group program promotes and supports clinical trials for cancer therapies by coordinating researchers, cancer centers, and physicians to identify crucial issues in cancer research and design trials to answer these issues. Their goal is to make clinical trials more coordinated and efficient.More than 30 experts from across NCI, academia, major pharmaceutical companies, cancer research institutes and biotech participated in the workshop. In a presentation to the group, FasterCures Executive Director Margaret Anderson pointed to the many innovative solutions being applied by the venture philanthropy community -- nonprofit disease research organizations that are moving away from the more conventional public charity model and instead are adopting the tools and techniques of venture capital finance, and the strategies and tactics of high-technology business management. One prime example is the Leukemia and Lymphoma Society’s Therapy Acceleration Program (TAP), which targets therapies in areas of high unmet medical need, specifically funding investigators who are performing research in those areas at all stages of clinical investigation.  Another trend prevalent among these organizations is the prominence of clinical trial matching tools and trial databases. Many provide opportunities for patients to register their data and/or run complete registries for trials within the disease they focus on, helping to alleviate some of the stress that academia and industry often face with patient enrollment. Finally, another unique ability of these organizations is the capacity to run clinical centers for research. As NCI, industry, and academia seek out new models to help improve and accelerate the system, these venture philanthropies – many of whom are members of The Research Acceleration and Innovation Network (TRAIN) at FasterCures – provide a fertile nesting ground of ideas.We [...]

Thinking Impact, Philanthropically


By Elizabeth West, Program Manager, FasterCuresImpact investing (also known in some circles as mission investing) is a blanket term used to describe a variety of investment practices similar in their intent to generate measurable social and environmental impact alongside a financial return. In 2012 the practice of impact investing blew up, and it seems like this trend is only going to get bigger. As FasterCures’ Philanthropy Advisory Service is committed to helping those investing in the life sciences make the most informed decisions possible, we could not pass up the opportunity to learn about this new trend (permanent fixture?) in philanthropy at two recent conferences.  Imagination, Innovation and Impact in PhilanthropyThe first was the University of Southern California’s Annual Leadership Forum – Philanthropy: Imagination, Innovation, and Impact. The event brought together philanthropists, foundations, academics, and innovators to focus on understanding the passion and values of philanthropy and its possibilities and strategic practices that create greater impact. The highlight of the event was a candid discussion with Tom Steyer and his wife Kat Taylor - who have signed the Giving Pledge - alongside panels that covered an array of relevant topics from the power of collaboration, networks, evaluation, and learning to innovations like games for social change*. On impact investing, speakers highlighted different models (both familiar and unfamiliar), including the Omidyar Network, social impact bonds, community development financial institutions, and the Nonprofit Finance Fund.Some key takeaways include:The impact investing field is still in a proof of concept stage.It is import to conduct financial and impact due diligence on the front-end as well as to evaluate investment on the back-end.Impact investing is not philanthropy – it tries to accomplish something that philanthropy and government do not know how to do.Not surprisingly everyone agreed that evaluation is HARD. According to Steve Goldberg of Caffeinated Capital, of the ten largest federally funded programs, only one has demonstrated success. That may be a clear indicator that – at least according to the professionals at USC – impact investing is still in the “proof of concept” stage.The second conference we attended was the Council on Foundation’s Annual Family Philanthropy Conference, which offered a three session impact investing track led by professionals from Mission Investors Exchange, RSF Social Finance, and Confluence Philanthropy, among others. These panels focused on some of the granular details of MRIs, PRIs, and broader “impact investing”, as well as valuable insights from the audience members from foundations engaged in this area. The biggest message: The primary challenge is convincing others of the opportunity and value of impact investing. (According to participants, CFOs, accountants, and trustees are the most difficult to convert.)A particularly engaging presenter was Charles Kleissner, the co-founder of the KL Felicitas Foundation– a foundation that has led the way in putting both annual disbursements and assets into impact-first and financial-first investment vehicles. Kleissner spoke of how he arrived at impact investing – seeing it both as an alignment of his values and intentions, as well as a more efficient use of his capital. He considers himself [...]