Monthly Archives: August, 2013

A Weekly Advocacy Message from Mary Woolley: America can do better

Dear Research Advocate:

The 50th anniversary of the March on Washington and the clarion call for equality for all Americans brings to mind the work still to be done to address health disparities. For example, cancer incidence and death rates are significantly higher for African-Americans than for all other ethnic groups, and Hispanic and African-American adults are 1.5 to 2 times more likely to have diabetes than white adults. Our polling shows that nearly 75% of Americans believe it is imperative to conduct research to understand and combat health disparities. As a community of advocates, we need to press policy makers to keep this unacceptable gap in health care and health outcomes in their sights. America can do better.

As September nears, Congress returns to Washington with a looming fiscal debate. Treasury Secretary Jack Lew reports that the debt ceiling will need to be raised earlier than anticipated, possibly as soon as mid-October. The urgency of this deadline takes away any buffer time on which congressional leadership may have hoped to rely. A funding measure for FY14, sequestration, the debt limit, reforms and a government shutdown may well be contenders in the upcoming debate. It will certainly keep advocates for medical and health research busy — fighting sequestration, pushing for greater research funding, pressing for the exemption of user fees from sequestration (should the across-the-board spending cuts remain in place), and even weighing in on the impact of tax and entitlement reform on medical innovation, although it is unlikely that such a reform effort would happen now. Continue reading →

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Research!America Joins Coalition of Small Business Innovators

CSBI Encourages a Tax Code that Promotes Economic Growth and Creates Jobs

ALEXANDRIA, Va.- August 28, 2013– Research!America announced today it has joined the Coalition of Small Business Innovators (CSBI).  CSBI is a national, non-partisan coalition of organizations dedicated to stimulating sustained, private investment in small, highly innovative companies focusing on the development of new technologies.

Research!America is the nation’s largest nonprofit public education and advocacy alliance working to make research to improve health a higher national priority.

“Research!America is a particularly influential voice in efforts to promote medical innovation. Our missions are well-aligned, and we are truly pleased they have joined our effort,” said Coalition spokesperson Sarah Elliott.

“Our principles of advocating for strong policies that support furthering medical, health and scientific research are in line with CSBI’s goals, and we are excited to join the effort,” said, Mary Woolley, CEO of Research!America. “For research intensive companies to develop cutting-edge products, the tax code needs to be adjusted to better incentivize private investment.  The tax reforms proposed by the Coalition make sense for business and job creation, for patients, and for our nation’s global competitiveness.” Continue reading →

Member spotlight: The Hydrocephalus Association

By Amanda Garzon, Communications and Marketing Manager and Ashly Westrick, Research Manager at the Hydrocephalus Association.

HA logoThe Hydrocephalus Association (HA) is proud to be a member of Research!America. HA is a charitable organization dedicated to eliminating the challenges of hydrocephalus by stimulating research, as well as helping people who are affected by this condition through education, support, and advocacy initiatives.  HA views research as a critical part of our mission.

Hydrocephalus is a condition characterized by the abnormal accumulation of cerebrospinal fluid within cavities of the brain. Nearly one million Americans – including children, seniors, and even veterans – are living with hydrocephalus today. There is no cure for hydrocephalus. The predominant treatment option for the disease is the implantation of a shunt through brain surgery – a device invented more than fifty years ago. The shunt has the highest failure rate of any implanted medical device, with half of all shunts failing within the first two years. A patient living with hydrocephalus is likely to undergo multiple brain surgeries in their lifetime. Continue reading →

Research Australia 2013 national public opinion poll

RAustralia2Research Australia has released its 2013 public opinion poll which reveals strong support for funding health and medical research. The findings provide an interesting backdrop for the country’s parliamentary elections this year.  Research Australia asked respondents their views on what priorities the Federal Government should be focusing on over the next 2 – 3 years.  Three significant health issues ranked high in the results: improving the hospital and healthcare systems, more funding for health and medical research and increasing funding and programs for preventative healthcare. Australians value a wide range of research, from basic research resulting in new discoveries, to translational research, which turns new discoveries into treatments, devices, policies and new practices. In fact, 59% of Australians see health and medical research as part of the solution to rising health care costs compared to 83% of Americans who believe medical research is important to reducing health care costs in a December 2012 poll commissioned by Research!America. Most of the findings in the Research Australia poll are consistent with the opinions of Americans regarding the importance of health and medical research in improving the health care system, addressing health and economic challenges and sharing personal health data. Nearly 80% of Australians said they’re willing to share their personal health records for research purposes while 66% of Americans said they were willing to do so in the December Research!America poll.  But the percentage rose in a May 2013 poll – 73% of Americans said they’re willing to share personal health information to advance research assuming appropriate privacy protections are in place.  Read more of Research Australia’s public opinion poll here. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Is a do-nothing Congress a public health threat?

Dear Research Advocate:

Last week, I wrote about the international trade deficit our country faces. This week, I’d like to focus on the budget deficit. From 2003 to 2011, Medicare and Medicaid spending grew 74% while our economy only grew 35%. With that kind of differential, no government can balance its budget. We need research to address disabling and costly illnesses, but that won’t be enough in and of itself to bridge the gap. We also need tax and entitlement reform that preserves needed services, squeezes out waste and inefficiency (by the way, that’s why we must also fight to protect health economics research, health services research and other research that optimizes health care financing and delivery) and promotes pro-innovation tax changes that are designed to sustain a prosperous nation.

One vocal advocate for a long-term view of the steps our nation must take to secure human and economic progress, including committing to ample and stable public support for medical research, is The Honorable John Porter, Research!America chair and former U.S. representative. He recently penned an op-ed published on CNN.com and elsewhere titled “A do-nothing Congress isn’t healthy.” Mr. Porter makes it clear that we must “view research through the prism of future generations” to properly set a legislative course towards prosperity and good health, and we must not delay. Continue reading →

Share Your Story: How You Can Fight for Tomorrow’s Medical Breakthroughs

By Endocrine Society President Teresa K. Woodruff, PhD

Teresa WoodruffThe sad stories flow in each day. A post-doctoral fellow gives up scientific research after 10 years of training. A cancer researcher faces a fruitless job search and expiring visa. The endocrinologist agonizes over letting a long-time lab employee go.

Hundreds of these tales are unfolding across the country as the National Institutes of Health struggles to stretch its dwindling budget. Because of sequestration, an NIH budget that barely kept pace with inflation through the 1990s and early 2000s was slashed by another $1.6 billion this fiscal year. If Congress cannot agree on a more balanced approach to budget cuts, another $6.7 billion in needed biomedical research funding will disappear in Fiscal Year 2014. The NIH funding cuts are nothing short of a disaster for biomedical science in the United States, as the Society journal Endocrinology’s Editor-in-Chief Andrea C. Gore observed in a recent editorial.

It is disheartening to think of the treatments that won’t be developed, the discoveries that won’t be made and the patients who will suffer as a result of Congress’ short-sighted funding decisions. As president of The Endocrine Society, I saw firsthand at the Society’s annual meeting ENDO 2013 just how many breakthroughs our researchers are making to ultimately improve the lives of people who have conditions like diabetes, thyroid disorders and cancer. Without biomedical research funding, promising scientific avenues won’t be explored and fewer new treatments will be available to patients in the years to come.

In my own lab at Northwestern University, we instituted a hiring freeze after our grant award was halved. Now we won’t be able to investigate some key questions, such as how endocrine-disrupting chemicals in our environment impact reproductive health.

But there are actions we as researchers and scientists can take to avert the worst effects of this crisis. Congress and the public need to know how much pain the sequester is causing by delaying breakthroughs in treating infertility, heart disease and metabolic disorders. Congress should reverse course. Take a moment to share your story with your Members of Congress, your hometown newspaper, or a health organization like The Endocrine Society, Research!America or United for Medical Research. By raising our voices as one, we can rewrite the story’s ending and protect our nation’s biomedical research legacy.

Sequestration Forces Scientist To Euthanize His Genetically Modified Rabbits

Excerpt of an article published in The Huffington Post with first-hand accounts of how sequestration is impacting scientific research.

When The Huffington Post published an in-depth look at how budget cuts were affecting scientific research, we encouraged readers to offer reactions and share personal experiences.

Responses varied. There were some in the political world, primarily conservatives, who believed the issue was overblown. Funding for the National Institutes of Health, they noted, remained robust at $29 billion. And while the agency’s budget has decreased because of sequestration, it is still dramatically higher than it was under Bill Clinton, even when adjusted for inflation.

Reactions from academics and advocates were decidedly different. If anything, they thought the piece undersold the problem. Michael Lubell, Director of Public Affairs at the America Physical Society, one of the world’s largest organizations of physicists, noted that the NIH budget “stagnated and in purchasing power declined significantly” in the past few years. And it isn’t just the NIH feeling the pinch, he added. The Department of Energy, National Science Foundation, and other government agencies are all slashing support for grants.

The most illustrative feedback, however, came from scientists, researchers and students from throughout the country who offered their own personal experiences with funding cuts, ranging from being forced to move their families to other countries to find work, to euthanizing the bunnies on which they’d been conducting experiments. Continue reading →

The sequester’s a public health hazard

Excerpt of an op-ed by columnist George F. Will, published in The Washington Post.

“The capacity to blunder slightly is the real marvel of DNA. Without this special attribute, we would still be anaerobic bacteria and there would be no music.”

— Lewis Thomasgeorge_will

The pedigree of human beings, Thomas wrote, probably traces to a single cell fertilized by a lightning bolt as the Earth was cooling. Fortunately, genetic “mistakes” — mutations — eventually made us. But they also have made illnesses. Almost all diseases arise from some combination of environmental exposures and genetic blunders in the working of DNA. Breast cancer is a family of genetic mutations.

The great secret of doctors, wrote Thomas — who was a physician, philosopher and head of Memorial Sloan-Kettering Cancer Center — “is that most things get better by themselves; most things, in fact, are better in the morning.” But many things require intelligent interventions — cures. So, to see the federal government at its best, and sequester-driven spending cuts at their worst, visit the 322 acres where 25,000 people work for the National Institutes of Health.

This 60th anniversary of the Clinical Center, the NIH’s beating heart, is inspiriting and depressing: Public health is being enhanced — rapidly, yet unnecessarily slowly — by NIH-supported research here, and in hundreds of institutions across the country, into new drugs, devices and treatments. Yet much research proposed by extraordinarily talented physicians and scientists cannot proceed because the required funding is prevented by the intentional irrationality by which the sequester is administered. Continue reading →

Sequestration cuts millions from university research dollars

Excerpt of an article published by The Salt Lake Tribune on sequestration’s impact to research institutions in Utah.

blogUtah

Paul Fraughton | The Salt Lake Tribune

Carl Thummel was about $200,000 short.

The University of Utah professor of human genetics had already won the money, about one-third of his lab’s annual budget, from the National Institutes of Health. It was due to begin paying out in December — just as the country went off the so-called fiscal cliff.

More than six months later, the money still hadn’t come, the victim of federal budget cuts known as sequestration. So he cut his own salary by 25 percent, as well as his technicians’ pay.

“They’re putting their salaries on the line, and some of them are family breadwinners,” he said in July, staring ahead. “That’s what we’ve got to do.”

Thummel, who studies diabetes, obesity and metabolism at his 10-person lab, wasn’t alone. The U. lost $32 million in research funding in fiscal 2013, dropping from about $393 million to $361 million, due primarily to sequestration. Though Thummel got word this month that his cash would be forthcoming, he said other labs haven’t been as lucky. “Each grant for a small lab is essential. In the past years, two grants was not hard to maintain, but it became more difficult and now it’s very difficult,” he said.

Read the full article here.

A do-nothing Congress isn’t healthy

Op-ed by The Honorable John Edward Porter, Research!America Chair and former U.S. Representative (1980 – 2001) published in CNN.

John Edward PorterAt every congressional recess, the question remains: What has Congress accomplished to advance medical innovation, or for that matter any of our national priorities?

A ritual of leaving town with no meaningful action on pressing issues seems to have taken hold as lawmakers once again meet with voters in their districts. Indeed, much will happen during this break, but as elected officials hold yet another town hall meeting, Facebook or Twitter chat or public event, thousands will be diagnosed with cancer or get the dreaded confirmation from a physician that they or a loved one has Alzheimer’s disease. Thousands will suffer a heart attack or stroke, and thousands of parents will learn that their child has a rare disease.

Researchers are racing against the clock to identify a new gene or molecule that could lead to the next medical breakthrough and bring us closer to cures and new therapies to halt disease.

Time is of the essence in the scientific community, but unfortunately, our elected leaders continue to squander precious time in political, ideological battles that yield little or no results. Is this the Congress you elected? This is not the first elected body to tackle formidable challenges, but it may be the first that has failed miserably in addressing critical issues that will have short- and long-term implications for the health and well-being of Americans.

Spending bills to fund the National Institutes of Health, the Centers for Disease Control and other agencies in the next fiscal year remain in limbo as sequestration, across-the-board spending cuts enacted in March, tightens its grip on medical innovation. As a result of these mindless budget cuts, researchers are delaying or scrubbing promising studies. Institutions across the country have closed labs, reduced their work forces and implemented hiring freezes. Young scientists are rethinking their career paths or moving abroad to countries that have accelerated investments in research. Continue reading →

Federal sequestration hits home for university researchers

Excerpt of an article published by the South Bend Tribune on the devastating effects of mandatory federal budget cuts to university researchers, especially at the University of Notre Dame and Indiana University School of Medicine-South Bend.

Professors at research institutions across the country are wondering which of their projects will be reduced in scope or eliminated as a result of the mandatory federal budget cuts known as sequestration, which took effect March 1.

Among those wondering and worrying are researchers at the University of Notre Dame and Indiana University School of Medicine-South Bend.

Some already have gotten word that grants they sought won’t be funded because of the federal cuts.

Sequestration “isn’t like a cliff. It’s going to happen relatively slowly over a two- or three-year period,” said Robert Bernhard, Notre Dame’s vice president for research.

Notre Dame’s research expenditures from external sources in fiscal year 2012 were about $104 million, with $83 million coming from federal dollars. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Are we entering “A Dark Age for Science in America”?

Dear Research Advocate:

The Commerce Department’s report of the U.S. trade deficit narrowing to its lowest level since October 2009 is welcome news, but the devil is in the details. Despite the economic progress, our trade deficit with China is nearly as large as our overall trade deficit. Put that together with the fact that China is rigorously investing in R&D while our nation stifles it, and you can see the handwriting on the wall. U.S. export capabilities will be stymied while China’s are bolstered. It’s not a recipe for a strong and stable economy going forward.

China is not the only nation steadily increasing investment in R&D, taking a page from what used to be the U.S. playbook. As I shared with Jonathan Cohn of The New Republic for his article today, “If federal funding continues to decline, our leadership status in the short-term will be tenuous at best.” Research!America’s polling on international competitiveness shows that Americans are acutely aware of our declining leadership status: More than half believe that a country other than the U.S. will be the global leader in science and technology by 2020. A quarter of respondents say that China will be the next world leader.

Sam Stein of The Huffington Post portrays the consequences of short-sighted budgets for science. His story’s dramatic headline — “Sequestration Ushers In A Dark Age For Science In America” — is illustrated with economic points and also stresses what may be lost in terms of scientific discovery. Claire Pomeroy, MD, president of the Albert and Mary Lasker Foundation, reinforces the sentiment in her piece on the importance of research advocacy, also in The Huffington Post yesterday. Please join us in being sure your elected representatives receive the message carried in these articles, and then urge everyone in your networks to do the same! Continue reading →

Millennials Move On

By Tyler Wiechman

Wiechman currently works in the cardiovascular specialty of a privately owned pharmaceutical company working with specialists and hospitals in the Central Pennsylvania Region.  He withdrew from a PhD in biomedical sciences from the Penn State University Hershey College of Medicine and received his BS in Psychology from the University of Delaware in 2011. He has worked for three different labs focusing on Neurological/Psychological health and behavior. 

TylerWAspiring medical scientists face increasing pressure as they aim to eradicate a disease state, find a new genetic marker for cancer or any number of neurological diseases, or create the next clinically sound pharmaceutical product.  First, they have to excel in their bachelor’s level biological and laboratory sciences.  This commitment alone costs tens of thousands of dollars of tuition and other bills and an overwhelming amount of time, but during these intense four years they are also expected to volunteer hundreds of hours to their local hospital and gain independent research experience.  If that’s not enough, they spend the remainder of their precious time studying for the GRE and/or MCAT depending on the degree program they plan on pursuing.  Finally (and with a huge sigh of relief), the acceptance letter is opened and you pack your bags, move to a new apartment and begin the long and arduous road that is graduate level research.

So after putting forth this much work and making so many sacrifices (and of course getting ready to multiply those sacrifices and efforts tenfold) why does a young scientist leave clinical research?  This is especially troubling when many of these pupils have personal stakes in their research due to the loss of a family or friend or a problematic condition in their genetics.  First, it’s important to look at the numbers.  The troubling truth is that, on average, there is a fifty percent attrition rate from PhD programs around the country with an even higher rate (55-59%) in the life sciences. This number is unacceptable and alarming—and I’m a member of that group.  I speak from personal experience when I say that withdrawing from my PhD was one of the hardest decisions I’ve ever had to make—thankfully my work in the pharmaceutical industry and a close relationship with my former mentors still allows me to be active in the healthcare community, but many are not as lucky and abandon their passion completely. Continue reading →

2014 Lurie Prize in Biomedical Sciences

The Foundation for the National Institutes of Health (FNIH) is accepting nominations for the 2014 Lurie Prize in the Biomedical Sciences, an annual award recognizing outstanding achievement by a young scientist in biomedical research.

The Prize? $100,000, made possible by a generous gift from Ann Lurie, FNIH Board Member, distinguished philanthropist and president of the Ann and Robert H. Lurie Foundation.

A few things to remember if you want to apply: the nominator must be a member of an accredited educational and/or scientific institution; the candidate must be 52 or younger on January 1, 2014; all nomination materials must be in English; and no self-nominations are allowed.

The awardee will be selected by a jury of six distinguished biomedical researchers, chaired by Solomon H. Snyder, MD, Distinguished Service Professor of Neuroscience, Pharmacology & Psychiatry of the Solomon H. Snyder Department of Neuroscience at Johns Hopkins University School of Medicine.

Last year’s winner was Ruslan M. Medzhitov, PhD, the David W. Wallace Professor of Immunobiology at Yale University School of Medicine and a Howard Hughes Medical Institute Investigator for discoveries related to the immune system.  The innate immune system that Medzhitov studies rapidly mobilizes a response to infection and, together with the adaptive immune system, is crucial to protecting human health.

Deadline to submit nominations is October 1, 2013, at 1 p.m. Eastern.

If you have any questions, email lurieprizeinfo@fnih.org.

John Eng Named Second Golden Goose Award Recipient for 2013

John Eng, MD, was recently named as the latest winner of the Golden Goose Awards. Eng is the second winner announced in 2013, and others will be named in the coming weeks. The Golden Goose Award was created last year to celebrate researchers whose seemingly odd or obscure federally funded research turned out to have a significant, positive impact on society.

Eng, a one-time researcher with the Veterans Administration in New York City, discovered that the venom contained in the bite of a Gila monster — a lizard native to the southwest U.S. and northwest Mexico — had components that could aid diabetics. His research was funded by the VA and built on previous studies funded by the National Institutes of Health.

Soon after, Eng purchased a booth at the annual meeting of the American Diabetes Association, a Research!America member, touting his discovery. He caught the attention of a then-small biotech, Amylin Pharmaceuticals. Amylin developed the discovery into a drug that won approval from the Food and Drug Administration in 2005. Since then, the drug — Byetta — has proven effective at helping diabetics moderate their blood sugar. Continue reading →