By Angelo Bouselli, Communications Manager, FasterCures
It’s one of the most-awaited magazine covers of the year: when Time magazine announces its so-called “Person of the Year.” Every December, the editors of Time devote an issue to the person who “most affected the news of our lives, for good or ill, and most embodied what is important about the year.”
The folks at Time, in keeping with their long-held tradition of list-making, recently compiled a list of “10 Ideas Changing the World Right Now.” Coming in at number 8 – the National Cancer Institute (NCI) and its efforts to establish the United States’ first national biobank.
With the global economy being reshaped before our eyes, Time Magazine highlights “10 Ideas Changing the World Right Now.” At number eight on the Magazine’s list… Biobanks! Time devotes this slot to the scientists at NCI who are heading up an effort to establish the United States first national biobank.
Established in 2005, the mission of NCI’s Office of Biorepositories and Biospecimen Research (OBBR) is to “guide, coordinate, and develop NCI’s biospecimen resources and capabilities and ensure that human biospecimens available for cancer research are of the highest quality.” The NCI biobank will be a safe house for tissue samples, tumor cells, DNA, and blood, which will be used to for research into new treatments for diseases. OBBR hopes to have mapped out a plan for a national biobank by fall 2009, but the recent stimulus could accelerate that timetable.
The OBBR biobank is an organic bank account, in which biomaterial deposits earn interest in the form of knowledge and therapies. There’s no monetary reward -- just the potential that you might benefit from the accumulated data at some later date. This knowledge is the very reason FasterCures launched BioBank Central in 2006. Biobank Central is a Web based portal to connect researchers to resources, encourage the donation of specimens, and educate the public about the benefits of research on banked biospecimens. It also serves as a timely source of news and information about biorepositories and their role in medical research and development.
In 2009, BioBank Central launched a new feature, Spotlight on Innovation highlighting individuals and organizations doing exceptionally innovative work in biobanking. Our first Spotlight focused on the Susan G. Komen for the Cure® Tissue Bank at the Indiana University Simon Cancer Center. This bank’s mission is to collect samples of normal, healthy breast tissue and other biospecimens from healthy women, providing a baseline for breast cancer research. Biobanks are changing the world – one cell at a time.
For more information on biobanks visit BioBank Central.
Monday, March 30, 2009
Tuesday, March 24, 2009
FasterCures is Stopping TB
By Loren Becker, Global Health Program Analyst, FasterCures
Today, as health workers and communities globally observe World TB Day, 25,000 new people will be diagnosed with tuberculosis and nearly 5,000 will die from the disease. Most TB sufferers are adults in their working years, costing the world about $12 billion in economic productivity each year. Many more also are infected with HIV/AIDS, compounding an already massive humanitarian crisis, particularly in sub-Saharan Africa. The slogan for World TB Day is “I am stopping TB.” Unfortunately, TB control efforts are unable to keep up with the epidemic: a new report released by the World Health Organization this week tells us that the number of new cases and deaths continues to grow with each passing year.
Many factors contribute to the severity of the global TB problem, not least of which is that the tools we have to fight the disease are antiquated and inadequate. In a world where we can splice genes and grow new tissue out of stem cells, very little attention is paid to improving the options for patients infected with this disease that has long since ceased to be a concern for most of us in the developed world. As a result, health workers in the poorest countries are stuck with a vaccine that is over 80 years old and only protects children, drugs that are over 40 years old and difficult to stomach, and diagnostics that frequently fail to give clear, actionable results. Harsh treatment regimens frequently lead to noncompliance, which, in turn, lead to drug resistance. Increasingly, health workers are confronting strains of TB bacteria that are able to resist some or even most of the available drugs.
Despite the dire statistics, TB experts see room for optimism. As awareness of the global epidemic has grown, so has funding and attention from governments, foundations, and other sources. In the last decade, several new initiatives have joined the fight to control TB and to develop better tools to aid future efforts. Researchers within some of these groups are making key contributions in terms of expanding our basic scientific knowledge about TB, as well as translating that knowledge into improved vaccines, drugs, and diagnostics. The entrance of these new players has led to exciting advances and expanded the opportunities for those concerned to get involved in stopping TB.
Many of the new research groups, as well as their more established counterparts, are nonprofit organizations that receive most or all of their funding from governments and foundations. Private philanthropists also can, and do, play an important role in funding research to develop and deliver new tools in the fight against TB. In order to help these donors understand the field of TB research, the major nonprofit players, and targeted areas of philanthropic R&D investment, the FasterCures Philanthropy Advisory Service is including TB as one of four diseases covered during the project’s pilot phase. The TB module of our Philanthropy Advisory Service is expected launch this June. Through this effort, FasterCures is stopping TB.
Today, as health workers and communities globally observe World TB Day, 25,000 new people will be diagnosed with tuberculosis and nearly 5,000 will die from the disease. Most TB sufferers are adults in their working years, costing the world about $12 billion in economic productivity each year. Many more also are infected with HIV/AIDS, compounding an already massive humanitarian crisis, particularly in sub-Saharan Africa. The slogan for World TB Day is “I am stopping TB.” Unfortunately, TB control efforts are unable to keep up with the epidemic: a new report released by the World Health Organization this week tells us that the number of new cases and deaths continues to grow with each passing year.
Many factors contribute to the severity of the global TB problem, not least of which is that the tools we have to fight the disease are antiquated and inadequate. In a world where we can splice genes and grow new tissue out of stem cells, very little attention is paid to improving the options for patients infected with this disease that has long since ceased to be a concern for most of us in the developed world. As a result, health workers in the poorest countries are stuck with a vaccine that is over 80 years old and only protects children, drugs that are over 40 years old and difficult to stomach, and diagnostics that frequently fail to give clear, actionable results. Harsh treatment regimens frequently lead to noncompliance, which, in turn, lead to drug resistance. Increasingly, health workers are confronting strains of TB bacteria that are able to resist some or even most of the available drugs.
Despite the dire statistics, TB experts see room for optimism. As awareness of the global epidemic has grown, so has funding and attention from governments, foundations, and other sources. In the last decade, several new initiatives have joined the fight to control TB and to develop better tools to aid future efforts. Researchers within some of these groups are making key contributions in terms of expanding our basic scientific knowledge about TB, as well as translating that knowledge into improved vaccines, drugs, and diagnostics. The entrance of these new players has led to exciting advances and expanded the opportunities for those concerned to get involved in stopping TB.
Many of the new research groups, as well as their more established counterparts, are nonprofit organizations that receive most or all of their funding from governments and foundations. Private philanthropists also can, and do, play an important role in funding research to develop and deliver new tools in the fight against TB. In order to help these donors understand the field of TB research, the major nonprofit players, and targeted areas of philanthropic R&D investment, the FasterCures Philanthropy Advisory Service is including TB as one of four diseases covered during the project’s pilot phase. The TB module of our Philanthropy Advisory Service is expected launch this June. Through this effort, FasterCures is stopping TB.
Monday, March 16, 2009
You Get What You Pay For?
By Melissa Stevens, Director of Special Projects, FasterCures
You wouldn’t choose a restaurant based on how little it pays its chef, or a surgeon based on how cheaply the hospital retains his services. So why would you choose a charity based on how low its overhead is?
Dan Pallotta is the author of the newly released Uncharitable: How Restraints on Nonprofits Undermine Their Potential. Pallotta spoke at a Milken Institute Forum on February 11 about his new work, which is described as “a manifesto that puts a new cause on the map - equal economic rights for charity.” He addressed the compensation disparities between for-profits and nonprofits, and challenged long-held conventional wisdom that overhead is a reliable measure of effectiveness.
Pallotta argues that charities are pressured into playing by different rules than for-profits, and that these pressures can stifle the organization’s productivity.
Consider:
Pallotta calls for developing a metric for assessing charitable giving. FasterCures agrees with this approach, and is leading the charge in the biomedical research space with the Philanthropy Advisory Service (PAS), an information resource that aims to create a transparent marketplace about nonprofit disease research organizations that fund and facilitate disease research. The PAS organizes and analyzes information about strategy, research portfolio, management, and financials. Even more importantly, the PAS creates an assessment framework to evaluate an organization’s internal and external contributions to the field. These assessments are made based on the organization’s own mission statements, as well the unique nuances of the disease research system.
The PAS framework organizes our assessment around the following metric categories:
You wouldn’t choose a restaurant based on how little it pays its chef, or a surgeon based on how cheaply the hospital retains his services. So why would you choose a charity based on how low its overhead is?
Dan Pallotta is the author of the newly released Uncharitable: How Restraints on Nonprofits Undermine Their Potential. Pallotta spoke at a Milken Institute Forum on February 11 about his new work, which is described as “a manifesto that puts a new cause on the map - equal economic rights for charity.” He addressed the compensation disparities between for-profits and nonprofits, and challenged long-held conventional wisdom that overhead is a reliable measure of effectiveness.
Pallotta argues that charities are pressured into playing by different rules than for-profits, and that these pressures can stifle the organization’s productivity.
Consider:
- Compensation – Salaries for nonprofit executives are frequently criticized as too high. When nonprofits are compelled by external forces to tamp down executive compensation, recruitment quality is the first casualty.
- Advertising – Mass marketing is considered wasteful and frivolous in the nonprofit world – a costly and shortsighted judgment in the era of the multimedia-driven, 24-hour news cycle. The refusal to play in the mass marketing arena stifles charities’ ability to capture market- and mind-share, and cedes the stage to campaigns about the latest soft drink or i-product rather than malaria eradication or ending hunger.
- Vision –Nonprofits are incentivized to spend funds in the near-term to make an immediate impact, leaving them unable to invest in long-term, strategic initiatives, and sacrificing long-term gains for short-term returns.
- Learning – Nonprofits are given very little room for error in the court of public opinion. The climate of hard judgment creates disincentive for creativity and risk-taking. A risk-averse entity will never reach its full potential.
- Capital – Nonprofits are locked out of the financial markets because they do not pay financial returns. This leaves them continually dependent on what FasterCures’ calls “passion capital,” which only promises social returns.
Pallotta calls for developing a metric for assessing charitable giving. FasterCures agrees with this approach, and is leading the charge in the biomedical research space with the Philanthropy Advisory Service (PAS), an information resource that aims to create a transparent marketplace about nonprofit disease research organizations that fund and facilitate disease research. The PAS organizes and analyzes information about strategy, research portfolio, management, and financials. Even more importantly, the PAS creates an assessment framework to evaluate an organization’s internal and external contributions to the field. These assessments are made based on the organization’s own mission statements, as well the unique nuances of the disease research system.
The PAS framework organizes our assessment around the following metric categories:
- Accountability: The degree to which an organization engages in planning, demonstrates transparency, and upholds responsibility to stakeholders.
- Collaboration: The degree to which an organization can engage and nurture relationships that accelerate the overall funding and research cycle.
- Research Effectiveness: The degree to which the organization’s research portfolio yields sufficient data and deliverable returns to achieve its stated mission.
- Resource Building: The degree to which the organization contributes critical resources and infrastructure to scientific advancement.
Friday, March 13, 2009
Is the HIPAA Privacy Rule Impeding Research?
FasterCures invites you to a special briefing and discussion
Wednesday, March 25, 1:30 pm – 3:00 pm
Featuring:
But has the HIPAA Rule compromised both patient privacy and medical discovery? A recently released IOM report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, examines HIPAA one decade later, and finds that these federal standards may be due for an overhaul, to serve the interests of progress as well as patients. Come join us to hear about the report's findings, and to discuss what happens next.
Please join FasterCures for this timely discussion on: Wednesday, March 25, 2009
1:30 pm – 3:00 pm
1101 New York Avenue, NW, Suite 620 Washington, DC 20005
Space is limited, please RSVP to Patricia Wolf at pwolf@fastercures.org or 202-336-8917, by COB Monday, March 23, 2009.
Wednesday, March 25, 1:30 pm – 3:00 pm
Featuring:
- Marc Boutin, Executive Vice President & Chief Operating Officer, National Health Council; Institute of Medicine (IOM) Committee Member
- Sharyl Nass, Study Director and Senior Program Officer, IOM
- Greg Simon, President, FasterCures
But has the HIPAA Rule compromised both patient privacy and medical discovery? A recently released IOM report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, examines HIPAA one decade later, and finds that these federal standards may be due for an overhaul, to serve the interests of progress as well as patients. Come join us to hear about the report's findings, and to discuss what happens next.
Please join FasterCures for this timely discussion on: Wednesday, March 25, 2009
1:30 pm – 3:00 pm
1101 New York Avenue, NW, Suite 620 Washington, DC 20005
Space is limited, please RSVP to Patricia Wolf at pwolf@fastercures.org or 202-336-8917, by COB Monday, March 23, 2009.
Monday, March 9, 2009
FasterCures Applauds Stem Cell Ban Reversal
FasterCures applauds today’s executive order by President Barack Obama to lift the eight-year old ban on federal funding for research on new stem cell lines. President Obama’s order marks the reversal of the August 2001 decision by the Bush Administration banning federal funding for all stem cell lines created after that date.
Today’s order marks an important step toward exhaustively exploring every possible avenue in the search for new treatments for deadly diseases. Polls demonstrate that more than 70 percent of the U.S. public supports federal funding for stem cell research. This reversal is a long overdue measure that moves toward the ultimate goal of all medical research: saving lives.
FasterCures president Greg Simon weighed in on the reversal: “President Obama has taken politics out of science and put science where it belongs – in the forefront of the fight to defeat the diseases that are taking our loved ones before their time. We cannot afford to let ideology trump ideas rhetoric defeat research. FasterCures applauds the President’s decision, and urges the NIH to move with deliberate speed and care to develop and finalize the new guidelines.”
Today’s order marks an important step toward exhaustively exploring every possible avenue in the search for new treatments for deadly diseases. Polls demonstrate that more than 70 percent of the U.S. public supports federal funding for stem cell research. This reversal is a long overdue measure that moves toward the ultimate goal of all medical research: saving lives.
FasterCures president Greg Simon weighed in on the reversal: “President Obama has taken politics out of science and put science where it belongs – in the forefront of the fight to defeat the diseases that are taking our loved ones before their time. We cannot afford to let ideology trump ideas rhetoric defeat research. FasterCures applauds the President’s decision, and urges the NIH to move with deliberate speed and care to develop and finalize the new guidelines.”
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