Promising Research Can’t Stall for Lack of Funding

Excerpt of a joint op-ed by Research!America President and CEO Mary Woolley and Susan G. Komen President and CEO Judith A. Salerno published in The Huffington Post.

MW & JSFebruary 23, 1954, was a milestone in the history of American medical research. That day, children at Arsenal Elementary School in Pittsburgh lined up to receive injections of a promising vaccine. Within months, schoolchildren all over the country were doing the same, and polio was on its way to being eradicated in the United States. The disease, which had killed and paralyzed children and adults alike, would no longer be a threat.

This remarkable achievement would not have been possible without the work of Dr. Jonas Salk and his team at the University of Pittsburgh, and — equally significant — grant support from the National Foundation for Infantile Paralysis, now known as March of Dimes. Policymakers played a role, too, when the Polio Vaccine Assistance Act of 1955 made possible federal grants to the states for purchase of the vaccine and for the costs of planning and conducting vaccination programs.

A generation or two later, millions of individuals worldwide benefited from another major medical breakthrough. Remember when being diagnosed as HIV-positive was an automatic death sentence in the 1980s? Accelerated research supported by the National Institutes of Health (NIH), in partnership with Burroughs Wellcome and Duke University, resulted in the development of AZT, the first drug that slowed the replication of HIV. By 1987, the drug won FDA approval and marked the first major treatment in extending the lives of HIV/AIDS patients. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Happenings in and out of Washington

Dear Research Advocate:

I am writing a day early this week since all of us at Research!America will be engaged in our programs tomorrow. If you haven’t registered for the National Health Research Forum, there is still time to join us! More details here.

Congress is back in town. The House will soon consider a simple, short-term continuing resolution (CR) to fund the government through early December. (Nobody wants a repeat of last year’s government shutdown at the beginning of the new fiscal year, October 1.) To offset funding requested by the Administration to help meet the Ebola crisis, as well as to adjust for certain other “anomalies,” the CR bill includes a 0.0556% across-the-board spending cut. There may be modest negotiations, but this or a very similar CR is likely to easily pass both Houses shortly. After the election, it will be important to vocally support the efforts of Appropriations Committee Chairs Mikulski (D-Md.) and Rogers (R-Ky.-05) as they seek to complete the FY15 appropriations process with omnibus legislation before the 113th Congress adjourns in December. More on this in future letters. Continue reading →

The More We Invest in Medical Research Now, the More Lives We Save, Improve for Generations

Op-ed by Research!America Chair The Hon. John E. Porter published in The Huffington Post.

John Edward PorterWhy has science become a take-it-or-leave-it proposition for many Americans? Given all that has been accomplished thanks to our nation’s investment in medical research, the value proposition should be ingrained in the public consciousness — reductions in deaths from heart disease and stroke, the eradication of polio in industrialized nations, transformation of HIV/AIDS from a death sentence to a manageable chronic illness, a sense of justifiable optimism instead of despair when a child receives a cancer diagnosis. So much more is within reach if we summon the public and political will to end Alzheimer’s, prevent diabetes, put more cancers in the history books, effectively address mental illness, provide new medical technologies for our wounded warriors. The list goes on.

What will it take to raise awareness and build a greater appreciation of science among Americans and policymakers? Scientists themselves are the most trusted messengers for research, according to polling commissioned by Research!America, yet they are largely invisible to the public. A majority of Americans cannot name a living scientist and many do not know where research is conducted in the U.S. This underlying knowledge gap has led some to question the value of taxpayer-funded research. “If I can’t see it, it must not exist” has worked against research as anti-government sentiments combined with deficit-reduction imperatives drive decision-making on Capitol Hill. This attitude has led to a dearth in federal R&D investments, policies that hinder private sector innovation, challenges in combating global health threats and unreasonable attacks on behavioral and social sciences research. Federal support for medical and health research has also waned as many elected officials seek to diminish government’s role in accelerating medical progress on the mistaken assumption that the private sector and other entities will bear that responsibility.

Sequestration, the automatic spending cuts that stalled important research across the country, and years of flat-funding as homeland defense swept other priorities aside, have shifted the balance with federal funding for research on a downward trajectory. In reality, the public and private sector work hand-in-hand, relying on the discoveries derived from basic scientific research to develop the next blockbuster drug or medical device that could relieve the suffering of millions of patients; one cannot thrive without the other.

It’s time to recognize how different our lives would be without federally-funded research. Many scientific discoveries supported by the National Institutes of Health, the National Science Foundation and other federal agencies that we take for granted have improved our quality of life and protected us from major health threats. Why would we slow down the march of progress? Scientists can play a major role in ensuring that the American public connects the dots of the research pipeline by describing the importance of research in bringing new therapies and cures to market and reducing inefficiencies in our healthcare system.

Speaking at town hall meetings, at the local chamber of commerce or addressing students are some of the ways scientists can engage with the public and elected officials. Volunteering as a science advisor for candidates running for local or national office will help to enlighten and cultivate individuals who can potentially become champions for science in government. Only then can we expect Americans to rally for science and reject attempts by policymakers and others to undervalue research as a major contributor to our nation’s health, national defense and economic stability.

Also read op-ed by Research!America Board member and American Heart Association CEO Nancy Brown on the importance of medical research, here.

CU Scientists’ Discovery Could Lead to New Cancer Treatment

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blood cancer

The University of Colorado’s Gates Center for Regenerative Medicine and Stem Cell Biology just announced a potentially game-changing discovery in stem cell research for blood cancers and a whole host of other diseases.

Yosef Refaeli and his research team have found a way to expand blood stem cells. This is big news because blood stem cells can help treat blood cancers like leukemia and lymphoma as well as inborn immunodeficiency diseases such as sickle-cell anemia and autoimmune diseases like multiple sclerosis. But up until now, treatment using blood stem cells has been limited by the number of cells a patient can produce. Hundreds of thousands of Americans could be affected by this discovery.

The research was supported in part by funding from the National Institutes of Health.

The goal now is to move the technology from the lab into clinical trials. Colorado-based biotech company Taiga Biotechnologies is in the process of setting up the trials.

The research was originally published in the academic journal PLOS ONE. Read the paper here.

A Weekly Advocacy Message from Mary Woolley: Coming Soon: Straight Talk

Dear Research Advocate:

Just when you thought that there is no good news coming from Washington, it looks as though we have a new congressional champion for research. Senator Cory Booker (D-NJ) penned a most welcome op-ed in the Asbury Park Press this week. We trust this is just one way he works to convince his constituents and his fellow lawmakers of the high priority the nation should be assigning to research. Championing research can be a heavy lift, since it’s no secret that some policymakers don’t see why government should have any role in R&D. A recent article in Forbes pushes back. As part of the BRAIN Initiative, the Defense Advanced Research Projects Agency (DARPA) is researching a potential breakthrough in healing. It’s a long-shot, but DARPA is known for supporting long shots that have made major contributions to our lives. If the featured research proves successful, it will revolutionize the ability to help wounded warriors – and all of us – heal. It will easily pay for itself many times over. (Just as the GPS – a long-shot, expensive product of federally-funded research – revolutionized our national defense capabilities and has paid for itself over and over again in commercial application. That’s what federally funded research does. It goes where the free market can’t and mines new territory in science and technology. The private sector takes it from there.) The House and Senate defense appropriations bills would both cut funding for DOD-funded R&D. Has shooting ourselves in the foot become a policymaking imperative? Continue reading →

Member spotlight: Texas Biomedical Research Institute

By Robert Gracy, PhD, CEO of Texas Biomedical Research Institute

Dr  Gracy PicNow in its eighth decade of existence, the Texas Biomedical Research Institute in San Antonio, Texas, has a mission “to improve the health of our global community through innovative biomedical research.” Texas Biomed has a breadth and depth of scientific inquiry coupled with an unparalleled collection of research resources, which in combination provides its researchers unique capabilities. Texas Biomed also views partnering with Research!America – a strong advocate for growing our country’s investment in biomedical funding – as retaining an effective ally in maintaining and eventually strengthening the backbone of our country’s preeminent position in the biomedical research field.  

In the Department of Genetics, researchers are examining the genes related to complex diseases such as cardiovascular illness, diabetes, obesity, metabolic syndrome, macular degeneration, behavioral and psychiatric disorders, arthritis and osteoporosis – hoping to ultimately provide the foundation of knowledge that can lead to better treatment of these devastating illnesses and to personalize care according to the genetic profile of each patient. Continue reading →

Urge Your Senators to Support Pragmatic Reform of Research Regulations Today!

The Research and Development Efficiency Act (H.R. 5056) is a common-sense piece of legislation aimed at reducing unnecessary red tape that slows and adds needless costs to federally funded research. This bipartisan legislation passed the House unanimously, but the Senate has not yet considered it. The bill would require the White House Office of Science and Technology Policy to establish a task force to recommend reforms aimed at modernizing and streamlining the administrative requirements surrounding federally funded research, helping researchers to optimize the use of awarded funds.

Don’t let H.R. 5056 die in the Senate. We need your help to build momentum for Senate passage so that the President can sign H.R. 5056 into law this year. Urge your Senators to support this important bill today for pragmatic regulation reform tomorrow!

Take action now!

A Weekly Advocacy Message from Mary Woolley: Labor Day Weekend Check List

Dear Research Advocate:

Labor Day might mean a last chance for R&R, but it also means that election day is right around the corner. It only takes a minute to send a quick email or direct a tweet to candidates. Think of them as candidates for the role of R&D champion! And take a moment to share this call to action with your colleagues, friends and family. The power of social media is undeniable.

aycbeachThere are only 10 days until Congress returns to Washington to face a lengthy to-do list, which is unlikely to shrink much before the November elections. Appropriations action for FY15 has stalled out, with new battle lines being drawn over the time span for a Continuing Resolution (CR). Whatever the length, a CR is no more a solution than is kicking the can down the road on tax provisions. The medical device tax remains unchanged despite its intuitively counterproductive effect on the capital needed to develop lifesaving medical technologies, not to mention the jobs and new businesses that go with that development.  In addition, the R&D tax credit has not been renewed, let alone enhanced or made permanent. If we want our GDP to grow, our tax policies should be aligned with that goal. As things stand, if we don’t figure out how to boost our economy, China’s GDP is projected to surpass ours by 2017.  Continue reading →

A Weekly Advocacy Message from Mary Woolley: Deep thoughts occasioned by ice buckets

Dear Research Advocate: 
 
You have by now heard about the ALS “ice bucket” challenge (show support for ALS research by dumping a bucket of ice water over your head and/or writing a check for $100 to the ALS Association, then challenge three others to do the same.)  Whether viewed as a welcome late-summer distraction from imponderables like conflict in the Middle East, on-going clashes in Ferguson, Mo., or the mounting death toll from Ebola, or, rather, as the emergence of a new kind of advocacy similar to what produced the walks, runs and bike-rides for research that are ubiquitous today, the “ice bucket challenge” is worthy of attention.

I think that public attention to the “ice bucket” challenge is not only good for ALS research (and all the patients and their families who cope with this devastating illness), but is an opportunity to engage a newly-interested sector of the public, including all those members of Congress who have accepted the challenge. Think about those freely written $100 checks and consider that the NIH budget buys only about $100 worth of medical research per American, per year, on all diseases as well as vital basic research.  Add to that other federal agencies’ budgets, the private sectors’ expenditures (industry, academia, philanthropy, patient groups) and we can maybe triple that amount (generously computed, and including development along with research). Is that enough to assure better health and prosperity for our nation? I’d say not even close.  Not when brilliant young people are discouraged to the point of leaving the country if they want to work in science;  not when other nations are poised to take over U.S. leadership in R&D; not when we are looking at ALS heartbreak and huge federal debt associated with the costs of Alzheimer’s, as just two crises we should be focused on intently, with all the resources we can bring to bear.  Continue reading →

Federal Health Agencies Ramp Up Efforts to Fight Ebola

Colorized transmission electron micrograph revealing some of the ultrastructural morphology displayed by an Ebola virus virion. Photo credit: Frederick A. Murphy

The Centers for Disease Control and Prevention (CDC) sent more than 50 disease detectives and other highly trained experts to West Africa to battle Ebola. While here in the U.S., more than 350 CDC staff are working on logistics, communications, analytics, management and other functions to support the response 24/7 at CDC’s Emergency Operations Center.“We are fulfilling our promise to the people of West Africa, Americans, and the world, that CDC would quickly ramp up its efforts to help bring the worst Ebola outbreak in history under control,” said CDC Director Tom Frieden, MD, MPH.  “We know how to stop Ebola.  It won’t be easy or fast, but working together with our U.S. and international partners and country leadership, together we are doing it.” Read more here.

Meanwhile, researchers at the National Institutes of Health (NIH) and the National Institute of Allergy and Infectious Diseases (NIAID) are studying Ebola and seeking better ways to diagnose and treat the disease. In 2013, the NIAID reported spending $42.49 million on Ebola research. Public-private partnerships are critical to containing and preventing such deadly outbreaks. The NIAID is collaborating with Okairos, a biotech company, to develop Ebola vaccines. The NIH is working with the drugmaker Mapp Biopharmaceutical to scale up production of its Ebola drug Zmapp and partnering with BioCryst to advance the company’s experimental treatments. 

Sustained and robust federal funding is needed to respond to global health threats, and to support the development of vaccines to combat Ebola and other deadly diseases. Policymakers must assign a higher priority to medical research to ensure the health and wellness of Americans.

Click here to urge your representatives to support increased funding for federal health agencies in FY15.

 

A Weekly Advocacy Message from Mary Woolley: Can we put a dent in the costly toll of suicide?

Dear Research Advocate: 
 
The loss of American Icon Robin Williams has riveted national attention on suicide, one of the 10 most common causes of death in the United States. Today, we are releasing our updated fact sheet on suicide that you can use when meeting with lawmakers and educating others about the impact research can have. Efforts to prevent suicide rightly draw on research findings. But progress has been painfully slow, stymied by serious gaps – partly due to severely limited funding – in the basic research base that precedes private sector development, and stymied by the equivalent of handcuffs placed on social science research.

The notion promulgated by some in the Congress that social sciences research doesn’t add enough value to merit federal funding is not just unfounded, it’s holding us back. Social sciences research saves lives. Case in point: behavioral research guided the development of a suicide intervention that was pilot tested in schools in Georgia and Connecticut and resulted in a 40% reduction in attempted suicides. It has since been implemented in schools across the country. This is just one example of social sciences research at work.

Research moves faster when patient advocates engage. This is the history of the nation’s commitment to defeating polio, to ramping up HIV/AIDS research, to prioritizing breast cancer research and women’s health research overall. Writing in the New Yorker last month, Seth Mnookin described the impact that “dedicated … well-informed families” can have in pushing progress. In his responsive letter to the editor, Peter L. Saltonstall, CEO of the National Organization for Rare Disorders, focused on the use of social media by patient groups to establish global registries, taking full advantage of abilities we didn’t have just a few years ago, and in so doing, saving lives. But there is another message here. The research community must work more closely with patient advocates in order to drive medical innovation. As one of the researchers in the Mnookin article said, “Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’” Continue reading →

How To Help Accelerate Medical Progress In America

Excerpt of an article published in the Imperial Valley News.

AYCEach year in the United States, nearly 16,000 kids are diagnosed with cancer. And on any given day, as many as 5 million Americans are living with Alzheimer’s disease. Beyond its debilitating symptoms, the death rate for Alzheimer’s is on the rise.

But there are steps you can take to protect your family from these potentially devastating medical conditions.

One idea that may come as a surprise to many Americans is to contact your congressional representatives and the candidates for their seats.

That’s the suggestion of a national, nonpartisan, voter education initiative called “Ask Your Candidates!” designed to empower voters to talk to candidates about the future of medical progress in the United States. Congress plays a key role in influencing the future of lifesaving research. Many voters are asking candidates if, once elected, they will vote to increase federal funding for medical research and support policies that spur innovation.

The initiative helps voters engage candidates on social media and through local events, grassroots, advertising and other interactive projects.

Read the full article here.

Communicating Your Science to the Non-Expert

On July 23, the Society for Neuroscience held  its first interactive webinar titled “Communicating Your Science to the Non-Expert.” During the webinar, speakers discussed how to effectively describe the health and economic impact of your research to a nonscientific audience including policymakers and the media. The presentation covers the basics of crafting an elevator speech and a question and answer session with scientists.

Watch the entire recording online or one chapter at a time:

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A Weekly Advocacy Message from Mary Woolley: Behind the headlines

Dear Research Advocate:

News of the rising death toll from the Ebola outbreak in West Africa has captured attention in the U.S. With the arrival of two American patients for treatment in Atlanta earlier this week, we are reminded of our truly global society and the importance of a nimble research ecosystem. Complex global disease threats exemplify the importance of both the public and private sectors in protecting our health.  Why, then, are we not fully funding the NIH, CDC and FDA to ensure the  robust public health infrastructure needed to respond to population-wide threats, to pursue vaccine development and other prevention strategies, and to develop new treatment options for Ebola and a host of other threats?  Why have we not truly empowered industry and public-private partnerships with a regulatory and tax environment worthy of the 21st century?  Readers of these letters don’t need to be persuaded, but can be the persuaders of those who are resisting. Persistent, ill-informed arguments include: we can’t afford more federal support, when in fact we can’t afford the lack of it; our nation’s tax structure need not be competitive with that of peer nations; or industry can act alone.  Our job is to effectively refute them.

Speaking of Africa, the Africa Summit held here in Washington, D.C., earlier this week provided another sort of attention to that continent, which has a swiftly emerging middle class, the youngest population in the world and which, by 2050, will have a population twice the size of China!  Those who are stuck in the “aid” model for assuring that Africa realizes its potential — including its potential as a market — may not realize that there is a crying need for robust science, technology and STEM education as a component of African development if we expect to see self-sustaining economies.  Read more in a pre-Summit op-ed published in last week’s New York Times. Continue reading →

Member Spotlight: University of Southern California School of Social Work

By Marilyn Flynn, dean of USC School of Social Work

FlynnAs one of the nation’s first schools of social work, the USC School of Social Work is widely recognized as a top-tier graduate program that offers rigorous career preparation for academic, policy, and practice leaders and provides an innovative and supportive environment for research on critical social problems.

Researchers at the school are dedicated to exploring the social and behavioral determinants of physical and mental health issues, in addition to translating research findings into real-world strategies to improve the health and well-being of individuals and society. Because medical research is a critical component of this interdisciplinary pursuit, our scientists naturally embrace the mission of Research!America to improve awareness and build public support for research seeking to cure, treat, and prevent physical and mental disorders.

Our Hamovitch Center for Science in the Human Services was the first endowed center for interdisciplinary social work research at any university. A leader in the evidence-based decision-making and practice movement, the center continues to expand with the recruitment of nationally recognized faculty members and newly established research cores and institutes in aging; behavior, health, and society; child development and children’s services; homelessness, housing, and social environment; management, organizations, and policy transformation; military; and serious mental illness. Continue reading →

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