Monthly Archives: September, 2014

Research!America To Honor Leaders in Medical and Health Research Advocacy

Research!America To Honor Leaders in Medical and Health Research Advocacy

Robin Roberts, Michael Milken, Dr. Kenneth Olden,  David Van Andel, Dr. George Vande Woude and the Society for Neuroscience to Receive 2015 Research!America Advocacy Awards

ALEXANDRIA, Va.—September 29, 2014—Research!America’s 19th annual Advocacy Awards will honor distinguished research advocates who are trailblazers in advancing medical progress to improve the health and economic security of our nation. The event will take place on Wednesday, March 11, 2015, at the Andrew W. Mellon Auditorium in Washington, DC.

The 2015 Advocacy Award winners are ABC’s “Good Morning America” anchor Robin Roberts; Michael Milken, founder of the Milken Institute and FasterCures; Dr. Kenneth Olden, Director, National Center for Environmental Assessment, U.S. EPA; David Van Andel, Chairman and CEO, and Dr. George Vande Woude, Founding Scientific Director, Van Andel Research Institute; and the Society for Neuroscience (SfN).

“These exceptional leaders have advanced scientific discovery and innovation through their determination to improve the health of individuals worldwide,” said Mary Woolley, president and CEO of Research!America. “Their work has paved the way for others who are committed to ensuring that we save lives and sustain our nation’s global competitiveness with robust support for research.” Continue reading →

A Weekly Advocacy Message from Mary Woolley: Time to be honest with ourselves

Dear Research Advocate:

This week’s CDC announcement of the worst-case Ebola scenario is staggering. Saying, “Let’s be honest with ourselves …” President Obama addressed the UN this morning on the escalating threat posed by Ebola, urging world leaders to work together to address this truly global crisis. The Biomedical Advanced Research and Development Authority (BARDA) program, which received additional funding for Ebola drug development as part of the recently passed continuing resolution (CR), is a terrific example of how the public and private sectors can work together to develop drugs for national and global health threats like Ebola. BARDA provides market incentives so that private sector innovators can work on noncommercial emergencies. It’s a cost-effective strategy since it precludes the need for government to build drug development capacity the private sector already has, and it’s a good reminder that medical and health research is not about government funding, academic research, or private sector R&D. It’s about all of these things and all of us, working together to save lives.

Let’s be honest with ourselves about something else: policies that cripple private sector investment in research are stifling science.  One such policy involves the research and development (R&D) tax credit, which – despite historical bipartisan support – expired at the end of 2013 and has not been reinstated. Businesses of all sizes across a wide swath of scientific sectors rely on predictable, annual extensions of this tax credit (not that annual extensions are ideal; Congress would also be wise to finally make this credit permanent). Please consider sending a message to your representatives about the importance of reinstating and enhancing the R&D tax credit. Here are two good resources, one nationwide quantitative analysis from the National Association of Manufacturers and one qualitative account of the effects on businesses in Pennsylvania. Members of Congress must work together and quickly upon their return to Washington after the election to not only reinstate the R&D tax credit, but to enhance its reach and effectiveness. And they must pass an appropriations package that recommits to scientific innovation. Note I use the word “must,” not “should.”  When one assumes the role of leader, displaying leadership should not be an option.

And let’s be honest that we are under-investing in our federal research agencies. Determined to alter this state of affairs, Rep. Brian Higgins (D-NY-26), along with Rep. Rosa DeLauro (D-CT-03), recently introduced the Accelerating Biomedical Research Act in the House. The congressman is using some of his district work period/campaigning season to tour institutions that receive NIH funding in his district. If only more incumbents and challengers followed his example!  Rather than despairing that there aren’t more like Mr. Higgins, now is the time to work toward the day that there will be! Candidates who hear voters like you speak passionately now about the importance of advancing medical progress are more likely to become champions for research when they enter Congress next January. Personal stories about why research matters in your life and in your community make for some of the most persuasive advocacy tools.

Let’s be honest that along with personal stories, data truly is important (my advice: tell your story first, after that, add data). Consider the new easy-to-use district-level federal research funding fact sheets from the Federation of American Societies for Experimental Biology (FASEB). These local, by-the-numbers summaries provide information about the number of grants received in nearly 400 congressional districts from the NIH, NSF, DOE Office of Science, and Agriculture and Food Research Initiative in the Department of Agriculture and are useful additions when making your case for research.  We urge you to share this data as well as your commitment to voter education with five of your friends and family!  Join us in the “5 this Fall” campaign on social media.

Final note of honesty about social media … it works! Think “Ice Bucket Challenge” and think about the new ACT for NIH campaign, which is using “selfies” as a way to remind voters and policymakers that research is for everyone, leading to better lives for ourselves, our friends and our loved ones. Reaching an ever-expanding audience via social media is critical. I hope you’ll join Act for NIH by sharing a selfie on social media with the hashtag #ACT4NIH.

Mary Woolley

Hispanic Heritage Month: The Changing Face of Health Care

By Israel Rocha, CEO, Doctors Hospital at Renaissance

Israel Rocha_FinalSeptember 15 marks the beginning of Hispanic Heritage Month, a time to pay tribute to the generations of Hispanics who have enriched America’s history. It’s also an important time to consider how this community can be further empowered to make important contributions, particularly in the future of health care.

Research demonstrates that certain diseases disproportionately impact the Hispanic community, including diabetes, liver cancer, cervical cancer and HIV/AIDS. Clinical trials help researchers find better ways to diagnose, prevent and treat these diseases and others. However, Hispanics are significantly underrepresented in clinical trials. Despite representing 16 percent of the U.S. population, Hispanics comprise only 1 percent of clinical trial participants.

Given this historic underrepresentation, there is tremendous opportunity to boost clinical trial participation within diverse patient populations. According to a July 2013 study by Research!America:

  • More than 40 percent of Hispanics greatly admire clinical trial participants.
  • More than 2/3 of Hispanics would be willing to share health information to help researchers find better ways to prevent and treat disease.
  • Nearly half of the Hispanics polled rate a physician’s recommendation to participate in a clinical trial as very important.

Continue reading →

A Weekly Advocacy Message from Mary Woolley: Who has a stake in science?

Dear Research Advocate:

A continuing resolution to fund the federal government at just under Fiscal Year 2014 levels – it now includes supplemental funding to help combat the escalating Ebola epidemic – is on its way to the President’s desk, and members of Congress will soon be on their way home. Where does that leave us? At the very least, with something to talk about.

Today in Kentucky at the Research!Louisville program, now in its 19th year of celebrating science and scientists and engaging the broader community, I talked about the way the nation’s decision-makers have failed us all by setting our nation’s innovation engine on idle, dismissing the fundamental importance of research and innovation at the expense of our health, our national security, our fiscal stability, our economic strength, and our global leadership. And they are sending a message to talented young people like those at the University of Louisville that science is a risky career choice. Yet a “can do” attitude is very much alive here. A group of graduate students has organized a science policy outreach group, determined to bridge the gap between scientists and policymakers. This is an initiative that should be replicated nationwide!

A few days ago at our National Health Research Forum, Dr. Tom Frieden, director of the Centers for Disease Control and Prevention (CDC), himself a global leader in combating Ebola, emphasized how public health is a “best buy,” one that is ignored at our peril. And Dr. Anthony Fauci, the director of the National Institute of Allergy and Infectious Disease (NIAID) asserted: “we need a complete transformation of how we look at science.” That sentiment was echoed by other panelists in a no-holds-barred conversation about what is right, and wrong, with the research ecosystem. Here are links to video from, news coverage about, and a transcript of, the Forum. We are taking the Forum messages to the Hill and to the public; please join us! Continue reading →

Fear of vision loss top concern among Americans across all racial and ethnic groups

Stagnant funding could threaten progress in eye research

AEVR eventAmerica’s minority populations are united in the view that not only is eye and vision research very important and needs to be a national priority, but many feel that current federal funding ($2.10 per person, per year) is not enough and should be increased. This may stem from the evidence that most minority populations recognize to some degree that individuals have different risks of eye disease depending on their ethnic heritage.

And while these Americans rate losing their eyesight as having the greatest impact on their daily life and having a significant impact on their independence, productivity and overall quality of life, 50 percent of Americans who suffer from an eye-related disease are not aware of it.

These statics and more were the topic of discussion at a press event in Washington, D.C., today, where members of the media and leaders in the eye and vision research community gathered to interact with a panel of experts and weigh in on the topic of The Public’s Attitudes about the Health and Economic Impact of Vision Loss and Eye Disease. Continue reading →

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

Blood_Cancer_250x250

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!