Americans Say Congress Should Take Swift Action to Assure Patients Benefit from Treatments and Cures for Diseases
New Poll Data Summary booklet reveals concerns among Americans about the pace of medical progress
Majorities across the political spectrum say it is important that the new 114th Congress takes action on assuring the discovery, development and delivery of treatments and cures for diseases in the first 100 days of the legislative session (75% Democrats, 64% Republicans and 60% Independents), according to America Speaks, Volume 15, a compilation of public opinion polls commissioned by Research!America. As Congress considers numerous proposals in support of research, including the 21st Century Cures draft legislation aimed at speeding the delivery of lifesaving treatments to patients, it is notable to see public support in favor of accelerating medical progress.
“The new Congress has the opportunity to reinvigorate our research ecosystem and enact policies that will enable the private sector to expand innovation,” said Research!America Chair John Edward Porter. “Congress must work in a bipartisan fashion to realize the potential of promising studies to prevent and treat disease.”
An increasing percentage of Americans say the U.S. Food and Drug Administration (FDA) should move more quickly in order to get new treatments to patients, even if it means there may be risks. In 2015, 38% favor faster regulatory review, compared to 30% in 2013. Meanwhile, 25% say the FDA should act more slowly in order to reduce risk, even if it means patients may wait longer for treatments. Another 19% are undecided on this question and 18% do not agree with either position. Continue reading →
Dear Research Advocate:
The cover story of this month’s National Geographic describes the recent wave of science doubt as a “pop culture meme,” featuring in-the-news examples like climate change and vaccines, and discussion of tough challenges like replicability of research, scientific literacy (of note: increased science literacy has been shown to lead to increased polarization of opinion about science), and what is meant, anyway, by effective “science communication”? The article doesn’t mention what I often call the “invisibility” problem (see, for example, data showing low percentages of Americans who can name a living scientist), but that topic was addressed directly and indirectly in several sessions at last week’s annual meeting of the American Association for the Advancement of Science (AAAS).
Data from a Pew Research poll of AAAS members show that a majority of scientists now believe that it is important to engage with the public, with a high percentage saying they do so regularly. That is welcome news. Another AAAS session brought out the importance of the quality of that engagement, exploring connecting with non-scientists in ways that is positive for both scientist and non-scientist. And, Professor Susan Fiske of Princeton spoke to an overflow crowd in her featured session about work showing that all of us – people in general – for better or worse, and with consequences to match – make quick judgments about others’ intent and their degree of competency. (Perception of competency + perception of good intent = trust.) Fiske noted that politicians are almost never trusted, although they are sometimes viewed as competent. Scientists are mostly considered competent, but they are also considered to be cold, a judgment that can throw their intentions into question. Fiske said that it is possible to change perceptions about scientists if they convey warmth and motivation to cooperate, showing ‘worthy intent.’ (If you have followed Research!America’s work in communicating to the non-science trained public, you know that we advocate saying and conveying, “I work for you.” That advice fits right in here.) Continue reading →
Dear Research Advocate:
The President’s FY16 budget was released this week. It makes the case for, and does its math on the basis of, the end of sequestration. Hallelujah! If Congress agrees to discard this monster that no one wanted to begin with, perhaps the executive and legislative branches can work to position our nation for a better future. That most fundamental of goals has been neglected for far too long and it is now time to make strategic investments for our nation.
In that context, we’re excited about the level of interest in medical progress that has in many ways defined the early days of the 114th Congress. There are several bills in play that would recalibrate research and development policies and research funding to achieve a pace that meets the needs of patients and secures the public’s safety. We believe that NIH, CDC, AHRQ, FDA, and NSF should be the focus of a major strategic investment this year so that we can accelerate medical progress, so that we can put the brakes on Alzheimer’s, bolster our anti-infectious disease arsenal, and meet the other massive health/economic/fiscal/national security challenges before us. Read more here.
Dr. Margaret Hamburg has announced that she will be stepping down from her post as FDA Commissioner. She is an exemplary leader who has fulfilled a crucial role for the nation with characteristic vision, dedication and skill. More here.
And speaking of FDA, now is the time to share your input on the 21st Century Cures initiative. I have had the privilege of weighing in with Reps. Upton (R-MI) and DeGette (D-CO) and their staff members, and I encourage you to do the same. Join the conversation on social media with the hashtag #Cures2015 and send formal comments to email@example.com. Do it now: a new draft could come out as soon as two weeks from today. As I mentioned last week, Senator Alexander (R-TN) has launched an effort similar to 21st Century Cures. When details become available, Research!America will update you on ways to contribute to the Senate process.
As you strategize what your contributions to the various initiatives, working groups and legislative proposals will be, you might find it helpful to huddle with other organizations in the field. We’re planning a stakeholder strategy meeting for Research!America members, hosted at the offices of the Society for Neuroscience. Join us next Wednesday Feb. 11 at 1pm. Space is limited, so please reserve a seat by e-mailing Jordan Gates at firstname.lastname@example.org.
Exciting news Tuesday from Research!America board member and former Representative Patrick J. Kennedy and former Surgeon General Dr. David Satcher. Their partnership to address the state of mental health and addiction in this country and to achieve health equity is now formalized as The Kennedy Center for Mental Health Policy and Research within the Satcher Health Leadership Institute at the Morehouse School of Medicine in Atlanta. None of us should settle for the status quo approach when it comes to achieving mental health. It was noted that the military sees mental health explicitly as a “force multiplier;” giving our nation a competitive edge. I see the Kennedy-Satcher partnership as a force multiplier, too – there are no two people more passionate and none with a stronger track record as a leader for mental health. See key findings from a poll they commissioned here.
Mark your calendars, tomorrow (Friday Feb. 6) is an important day! It is “Give Kids a Smile Day” which promotes the importance of oral health and provides dental care to underserved children. In support of this effort, we are releasing our new Children’s Dental Health Research fact sheet. And speaking of David Satcher, he made dental health one of the foci of his tenure as Surgeon General. It was Dr. Satcher who called oral disease the “silent epidemic.” It is truly important to understand that children’s dental health is not a luxury; it is core to their health and wellbeing.
Tomorrow is also the last call for scientists at the post-graduate level and above to submit applications for “Connecting the Dots: Effectively Communicating Science to Non-Scientists,” a two-day program that we are hosting in partnership with the George Washington University School of Media and Public Affairs. Submit your application here by Friday.
No doubt you’ve heard of Black Friday and Cyber Monday: two days following Thanksgiving when Americans go holiday shopping in stores and online for the best bargains. But have you heard of #GivingTuesday, a day dedicated to giving back? On Tuesday, Dec. 2, organizations, families, businesses, community centers and students around the world will come together for one common purpose: to use social media to stimulate generosity and giving. Research!America is a partner of #GivingTuesday and throughout the last weeks of 2014, we will be encouraging people to support our mission by making a donation to our organization.
While #GivingTuesday is one day dedicated to encouraging people to make a donation to a cause they care about, Research!America will be using social media throughout the month of December to call people to action: under-investment in research and public health can’t continue! We hope you too will use the hashtags #GivingTuesday and #ReasonsforResearch and link to our donation page during the month of December to help us spread the word.
To view, link to or make a contribution to our donation page, visit www.researchamerica.org/supportourwork.
Excerpt of an op-ed published in The Hill by Research!America Board member E. Albert Reece, M.D., Ph.D., MBA, VP of medical affairs at the University of Maryland, the John Z. and Akiko K. Bowers Distinguished Professor and dean of the School of Medicine; and Paul B. Rothman, M.D., Frances Watt Baker, M.D. and Lenox D. Baker Jr., M.D. Dean of the Medical Faculty, VP of medicine at Johns Hopkins University and CEO of Johns Hopkins Medicine.
With the midterm elections now behind us, we could not help but notice that one crucial policy issue was not considered in a serious or thoughtful way on the campaign trail: today’s woeful funding shortfalls in science.
The American research enterprise, long the world’s gold standard for scientific progress, is at risk of slipping behind. For over a decade, the federal government has pulled back financial support for biomedical research. The National Institutes of Health (NIH) budget has failed even to keep pace with the cost of conducting research; factoring in inflation, it has declined 24 percent since 2003. Yes, we need to shrink the federal deficit, but by targeting research spending, this country risks trading a budgetary deficit for a discovery deficit.
Our academic medical centers at The Johns Hopkins University and the University of Maryland have made immense contributions to science, including the discovery of restriction enzymes, which gave birth to genetic engineering; the identification of the three types of polio virus; the discovery of a new class of drugs to treat breast cancer; and the development of vaccines for swine flu. Without NIH-funded basic research, none of these advances would have reached a single patient. Yet in fiscal year 2014, our two medical schools took a sequestration hit of about 10 percent on average of our total NIH funding. As we stare down the public-health threat of Ebola virus, we are calling on Congress to rethink its budgetary priorities and make biomedical research a national mandate.
Currently, NIH and other science agencies are operating under a continuing resolution, set to expire in December. This scenario creates tremendous uncertainty. Academic institutions like ours need consistency in federal funding so that we can align the size of our training programs to fit our future research workforce.
Read the full op-ed here.
Find out what your 2014 Candidates will do in Congress to support medical research
With less than a month remaining before Election Day, now is the time to get involved in the Ask Your Candidates! initiative. Through this effort, voters can ask congressional candidates to share their views on accelerating medical progress in America. Every voice makes a difference as we look to find treatments and cures for deadly and disabling diseases like cancer and Alzheimer’s, and other threats like Ebola.
There are two easy ways to participate:
- Send an email to your candidates using the pre-drafted message, or a message of your own, and by filling in your contact information and clicking “Send Message.”
- Create awareness about the importance of medical research by taking a selfie. Just follow these steps: 1) Personalize an AYC! sign (or create your own sign), sharing why you support medical progress; and 2) Post your signs on Facebook or Twitter, using the hashtag #AYCresearch, or send it to us at email@example.com. If you’d like to see examples of selfies, see the AYC! selfies Facebook album.
Dear Research Advocate:
The accomplishments of the recently announced 2014 Nobel laureates in the fields of physiology or medicine, and chemistry are breath-taking. Whether identifying the mechanisms by which the mind comprehends space and place, or enhancing ability to observe how diseases develop, these scientists have, over time, enabled progress that couldn’t have been determined by fiat. Science serves us all via an iterative discovery process, which is why policymakers are skating on thin ice when they censor research that doesn’t promise results that serve a date or purpose certain. Centuries ago, European rulers launched many ventures before eventually discovering the New World — not every journey was a success, nor was everything discovered anticipated in advance. It is ever thus as we continue to explore new worlds, since even as discoveries open new vistas, plenty of surprises occur. Indeed, some new worlds are not as “new” as first thought — to wit, October includes a holiday known to some as Columbus Day and to others as Indigenous Peoples Day. Seeing things in a new light doesn’t mean we should shut down discovery because some aspects of it make us uneasy or call our values into question.
Ebola has called our values into question, to be sure. Do we need a shared sense of existential threat like Ebola to arrive on our doorstep — a “Sputnik moment,” if you will — before Americans mobilize to demand more support for U.S. science? Although there is every reason to believe that the world can contain Ebola — we have contained all previous Ebola outbreaks — there is no denying that we are not as well positioned as we should be to face down this challenge, due to years of under-investment in research and public health, including research on diseases that seem rare and/or remote. My op-ed in Roll Call this week drives home this point, calling on decision-makers to act for NIH, CDC, and, fundamentally, for forward-thinking instead of reactive policies. Continue reading →
Op-ed by Research!America Chair The Hon. John E. Porter published in The Huffington Post.
Why 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.
A Weekly Advocacy Message from Research!America: Will appropriators do the right thing for research?
Dear Research Advocate:
Research!America board member and co-chair of One Mind, Patrick Kennedy, and the head of neuroscience research at Janssen Research & Development, Husseini Manji, shared their perspectives on the state of neurological and mental health research and treatment in a USA Today op-ed. As Kennedy and Manji remind us, a quarter of our population experience mental illness, but nearly 60% of those individuals do not receive any treatment. Federal funding for medical and health research is crucial to improving diagnosis and treatment, and developing cures for patients who suffer from mental illness, Parkinson’s, Alzheimer’s and a whole range of other diseases.
But time is ticking away on the appropriations process as the August recess approaches. With each passing day, the possibility of regular order diminishes and the likelihood of a continuing resolution (CR) increases. Yet all is not lost. Advocates must continue to push for increased funding for research and health agencies in FY15 (it would take the form of an “anomaly,” which is basically an exception to status quo). There has been talk, albeit muted, that some members may refuse to pass a CR and instead opt for a government shutdown, a scenario most Americans agree is harmful to federally funded programs, including medical research, according to our polling.
We learned first-hand the negative impact a government shutdown can have on research and clinical trials. Patients like Steve — featured in our sixth fact sheet installment — and others with Parkinson’s disease cannot afford delays in clinical trials. Please continue to share this fact sheet series with your networks and Members of Congress. They are generating buzz in congressional offices and getting the attention they deserve. Continue reading →
Matthew Gevaert and David Orr developed an innovative approach to cancer research, testing new drug compounds using live cells from patients with a device that resembles a Lego. Gevaert and Orr’s “3DKUBE,” a cell cultured plasticware, creates a 3Dmodel of patient cells that allows researchers to study the growth of the cells in a cultured environment that mimics the conditions of the human body. The process is designed to produce more relevant data on drug safety and efficacy, and determine which drugs are most effective for treating cancer patients. To expand use of this technology, the National Cancer Institute (NCI) awarded a $295,000 Phase 1 Small Business Innovation Research (SBIR) contract to Matthew and David’s company KIYATEC to develop a 3D model specifically for breast cancer patients. The company plans to eventually use the model to more accurately predict a patient’s response to certain drugs for lung and brain cancer.
A Weekly Advocacy Message from Research!America: Long-term commitment, short-term action. We need both.
Dear Research Advocate:
In a terrific op-ed in the Sacramento Bee, Greg Sorensen, MD, CEO of Siemens Healthcare North America and Research!America board member, writes about a young girl, Kayla Saikaly, diagnosed with aplastic anemia at 13-years-old and the life-saving bone marrow transplant she received at Southern California’s City of Hope Hospital.
FASEB Vice-President elect and Director of the Human Genetics Program at Sanford-Burnham Medical Research Institute, Dr. Hudson Freeze, appeared on a segment of San Diego’s U-T TV daily program “The Roger Hedgecock Show” with Morgan Fischer, an 8-year-old girl with a disorder called hypophosphatasia that severely hinders proper bone formation. Dr. Freeze discussed a groundbreaking therapy that has enabled the growth of new bone tissue in Morgan and other patients with this rare disease, dramatically improving the quality of their lives.
Whether or not Congress fosters medical progress through robust research funding and policies incentivizing private-sector medical innovation is not an academic discussion. It’s decision-making that bears on the lives of real people. It’s about Kayla and Morgan.
The theme underlying Research!America’s Medical Progress NOW initiative is that as Congress considers a variety of proposals aimed at generating more medical progress in the future — supplemental funding strategies, ways to make the innovation pipeline work smarter and faster over time — there is an opportunity to take action this year to reinvigorate medical progress. That opportunity is the FY15 appropriations process, and we ask appropriators to seize it. Kids like Kayla and Morgan, Americans all over our country fighting for the chance to lead normal lives or simply hold on to the lives they have, can’t place their illnesses on pause while Congress chooses between long-term commitment and short-term action. We need both. We need FY15 appropriation levels that enable medical and health research to flourish, not flounder. Read our letter to the leaders of the House and Senate Appropriations Committees here. And please send a note to your representatives in Congress urging them to speak up about the need for medical progress now. Continue reading →
Research that protects kids and patients is on the chopping-block. Why?
Legislation is being developed in the House of Representatives that would severely restrict or eliminate the appropriations funding mechanism for the Agency for Healthcare Research and Quality, the Administration on Children and Families, the National Center for Health Statistics and other programs charged with protecting children and patients. If the legislation passes with no alternate means of keeping this work going, Americans would lose the benefit of research that translates medical progress into safe healthcare, makes sure new medical treatments reach patients in rural as well as urban areas, prevents deadly medical errors, and protects at-risk children in the foster care system.
Help nip this legislative effort in the bud. Before Members of Congress take away access to information that saves the lives of children and other Americans, they should explain why saving those lives isn’t important.
By Alan G. Kraut, Executive Director of the Association for Psychological Science
In the minds of many people, there is a separation between biomedical research and behavioral research. But that separation is artificial. Behavior is at the core of many health problems. Six out of 10 of the leading causes of premature death, including heart disease, diabetes, and stroke, are linked in part to genetic influences but also to controllable behaviors like physical inactivity, poor diet and smoking.
Our 25,000 members are scientists and educators at the nation’s universities and colleges, conducting federally funded basic and applied, theoretical, and clinical research. They look at such things as the connections between emotion, stress, and biology and the impact of stress on health; they look at ways to manage debilitating chronic conditions such as diabetes and arthritis as well as depression and other mental disorders; they look at how genes and the environment influence behavioral traits such as aggression and anxiety; and they address the behavioral aspects of smoking and drug and alcohol abuse.
Just as there exists a layered understanding, from basic to applied, of how molecules affect brain cancer, there is a similar spectrum for behavioral research. Continue reading →