Tag Archives: medical innovation

A Weekly Advocacy Message from Mary Woolley: 2015: Pragmatism over politics

Dear Research Advocate:

As America rings in the New Year, many of us will be reflecting on the past and making resolutions for the future. To get a feel for the numerous ways in which NIH, CDC, AHRQ, NSF and FDA contributed to the well-being of Americans and others throughout the world in 2014, click here. I hope lawmakers are taking time now to establish New Year’s resolutions and set priorities for the new Congress, which convenes one week from today. My biggest wish for the new Congress?  Pragmatism over politics. If pragmatism rules, the next Congress will shake off the stultifying complacency that is weighing our nation down and act to reignite U.S. innovation. More here.

One reason pragmatism is so crucial is that it accommodates complexity. It would be terrific if the benefits of medical research and innovation could be catalogued like books in the library, but as Norm Augustine explains in The Journal of Clinical Investigation, no can do. The quantifiable benefits of research can stretch so far into the future and be so wide-ranging that it is nearly impossible to fully capture them. And not all the benefits are quantifiable. Policymakers are understandably interested in hard data to help predict the return on federal investment, but that doesn’t mean the value of science can’t be meaningfully conveyed to them. Norm’s commentary is an important reminder that as advocates, we should be prepared to defend science against inadequate estimates of its impact. It also speaks to our role in bridging the distance between scientific progress and such human values as compassion, empathy and curiosity. Pragmatic means logical and reasonable, not “monetizable.”  Continue reading →

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Statement by Research!America president and CEO Mary Woolley on the New Chair of the House Labor-HHS-Education Subcommittee

November 20, 2014

Congressman Tom Cole’s leadership on the Labor-HHS-Education subcommittee will help shape our ability to sustain and accelerate medical innovation as we confront health crises here and abroad. As a steward of the federal funding that lays the noncommercial foundation for private sector medical progress, Congressman Cole will play a pivotal role in determining whether our nation conquers Alzheimer’s, childhood cancer, Ebola and other insidious health threats. We commend his efforts to ensure quality health care for veterans, remove barriers to innovation through the repeal of the medical device tax and advance other health and research-related initiatives. We look forward to working with the congressman to strengthen our nation’s research infrastructure for the millions of patients awaiting new therapies and cures.

Statement by Research!America Chief Operating Officer Michael Coburn on Public Welfare Medal Recipient John E. Porter

Research!America salutes Board of Directors Chair John Edward Porter, the 2014 recipient of the Public Welfare Medal from the National Academy of Sciences (NAS), the Academy’s most prestigious award to honor the extraordinary use of science for the public good. Porter’s leadership in advocacy for research has strengthened our nation’s global competitiveness in science and technology and advanced medical innovation to new heights.  As chair of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education, Porter demonstrated tremendous foresight, calling on policymakers to support robust investments in research to improve quality of life, combat debilitating and deadly diseases and stimulate private section innovation. With the doubling of the National Institutes of Health budget (FY99 – FY03), Porter helped usher in a new era of improved health and longevity for all Americans. A lifelong public servant, Porter continues to champion biomedical research in the U.S., urging researchers, patients and the public at large to become stronger advocates for science.  As an inspirational force in the scientific community, Porter joins a distinguished group of medal recipients who leave a strong legacy for future generations.

 

A Weekly Advocacy Message from Research!America: Are we on the right path to protecting innovation?

Dear Research Advocate:

The budget and appropriations process typically reveals stark differences in funding priorities among the two parties. And this year is no exception. House Budget Committee Ranking Member Chris Van Hollen (D-MD-08) introduced the Democrats’ 10-year budget plan this week, which stands apart from the Republican proposal introduced by Chairman Paul Ryan (R-WI-01) most notably by ending sequestration. The Ryan budget, which won House approval today, is on its way to the Senate but is considered dead on arrival. Note that there’s still time to urge your Members of Congress to support medical and health research as this year’s appropriations process continues!

Teen “whiz kids” profiled in the latest issue of People magazine personify the future of science and medical innovation. Among them, Jack Andraka, who at age 15, created an affordable diagnostic test for pancreatic cancer that provides results in five minutes. He faced tremendous obstacles securing funding for his breakthrough innovation, a problem we see all too often in medical and health research. Such ingenuity propels our best and brightest to take risks but the funding to support their revolutionary ideas is not within their grasp.

Discussing these innovative projects with candidates and elected officials is key to elevating science and technology in the national conversation. In Research!America’s newly released poll data summary booklet, America Speaks, Volume 14, two-thirds of Americans (66%) say it’s important for candidates running for office to assign a high priority to funding medical research. Now is the time to ask future and returning Members of Congress if they believe that medical progress is a high national priority as part of our new national voter education initiative Ask Your Candidates!, which was formally launched this week. More details about America Speaks and the campaign can be found here. As the number of lawmakers with a background in science diminishes, it’s more important than ever to engage with your representatives. Michael S. Lubell writes in Roll Call that if we don’t elect a new scientist in the upcoming elections, it will mark a six-year decline from five to two Members of Congress who have a PhD in a natural science.

National Public Health Week, which wraps up tomorrow, provides another opportunity to engage policy makers about the benefits of health research. Don’t miss our recent blog post celebrating public health — an often underappreciated facet of our research ecosystem.

A new video highlighting backstage interviews with our 2014 Advocacy Award Winners illustrates the passion and drive of these extraordinary leaders who have contributed greatly to medical progress. We encourage you to nominate individuals and organizations whose leadership efforts have been notably effective in advancing our nation’s commitment to research for the 2015 Advocacy Awards.

As you’re aware, members of Research!America’s management team will guest-author this letter in Mary’s absence. This week’s author is Research!America’s vice president of communications, Suzanne Ffolkes.

Sincerely,

Suzanne Ffolkes

A Weekly Advocacy Message from Mary Woolley: Winning Hearts and Minds and Votes

Dear Research Advocate:

It has been a week since the Budget Conference Committee’s first meeting. The next public meeting is scheduled for November 13. Staffs are at work, and various Members are talking. There are no concrete signs of progress. What I keep coming back to is the failure of our nation’s decision makers to recognize and act on the reality that the priorities of Americans are reflected in both discretionary and entitlement programs. The persistence of sequestration underscores Congress’ inability to make decisions and choose priorities. The sequestration era has run its course, dealing Congress record lows in terms of public support; it’s past time to end the era and move on.

Recently I shared my letter to the Budget Conference Committee; it argued for an end to sequestration, pointing out the importance of investing in medical research as a pragmatic strategy for decreasing the national debt and deficit. This week I followed up with a letter on the importance of health research, pointing out how it helps identify smart medical innovation and optimal health care financing and delivery. The letter showcases the essential role of health economics, health services, public health, behavioral and social science research in assuring quality medical innovation and smart health care delivery. We are concerned that if the research stakeholder community at large does not speak out for this critical research, it will be compromised or even defunded altogether. Please join us in raising your voice. Continue reading →

Life According to Sam

SamNext Monday, October 21 at 9:00 pm EST, HBO will debut LIFE ACCORDING TO SAM, the story of Sam Berns, a young boy with an extremely rare and highly-rapid aging disease called Progeria, and his family’s 13-year fight to find a cure.

This film tells a story not only about the love of physician parents trying to save their son – it also portrays a winding journey throughout the scientific process and the pivotal role that medical innovation plays in our lives. In the film we see children with Progeria gather in Boston from around the world – all expected to live no longer than 13 years – to receive treatment and participate in a first-of-its-kind clinical trial.

The film’s Oscar®-winning Directors Sean Fine and Andrea Nix Fine have earned multiple awards for LIFE ACCORDING TO SAM, winning the “Best of Fest” at the AFI Docs Festival in Washington, DC; the Audience Award at the Nantucket and Martha’s Vineyard Film Festivals the Best Storytelling Award at Nantucket and Best Feature Documentary at the Woods Hole and Rhode Island International Film Festivals.

The Progeria Research Foundation, a Research!America member, is leading the fight to find better treatments – and ultimately the cure – for Progeria, the rare and fatal “rapid aging” disease affecting children around the world.

You can learn more online, visit their Facebook page and follow them on Twitter.

Medical Innovation Creates Great Value for Patients, Society and the Economy

By Robert J. Hariri, MD, PhD, Chairman, Founder and Chief Scientific Officer of Celgene Cellular Therapeutics.

Robert Hariri headshot (lab coat) - small jpg (2)Medical innovation is the source of dramatic improvements in the quality and length of life and also creates enormous value for society and the economy at large. For example, in 1900, the average U.S. life expectancy was 49 years. Today, it is 79. It is estimated by 2040, U.S. life expectancy will reach 85 years. This is primarily the result of innovation in medicine and improvements to public health.  New medical treatments accounted for 45 percent of the increase in U.S. life expectancy between 1960 and 1997 and for nearly three-quarters of the increase in U.S life expectancy in the first decade of the 21st century.

Living longer, healthier lives translates to economic health as well. Economists’ Kevin Murphy, PhD, and Robert Topel, PhD, calculate that life expectancy gains from 1970 to 2000 have added approximately $3.2 trillion per year to national wealth. They also estimate that a 1% reduction in cancer mortality would be worth $500 billion to the U.S. economy.

Unfortunately, there are a number of misconceptions about new medical treatments that are based on outdated information, or failing to consider medical innovation in perspective.  One misconception is that prescription drug spending is growing rapidly.  In fact, is it not — spending on prescription drugs actually declined by 3.5 percent per capita in the U.S. last year.  And the small portion of health care spending accounted for by prescription drugs actually saves money by reducing the need for other medical services. Continue reading →

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 →

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 →

Budget sequestration could soon cost us in lives

An excerpt of an op-ed by Robert I. Field, PhD, JD, MPH, professor of the Earle Mack School of Law & Drexel School of Public Health published in Philly.com.

Robert I. Field

Robert I. Field, PhD, JD, MPH

What do we get when Congress cuts federal spending across-the-board? Does it bring lower taxes, smaller deficits, and less bureaucracy?

How about worse health care, less medical innovation, and lost lives?

The budget sequester that Congress enacted in 2011 began to take effect this year with spending cuts for most federal programs. So far, the majority of Americans have seen little change. Some may even applaud the idea of forcing the federal government to make due with less.

But the sequester is about to exert an especially sinister effect that lies just outside of public view. It could cripple medical research.

The National Institutes of Health is the largest single source of biomedical research funding in the world. It supports work at most universities in the United States and at many around the world.

That’s not just important to the physicians and researchers who work at those institutions. It’s vitally important to everyone. NIH funding stands behind the development of almost every major drug that has emerged over the past 50 years. You can see the impact of this agency every time you open your medicine cabinet. It has also brought us countless medical devices and procedures. And led to 83 Nobel prizes. Continue reading →

Join us for a 4th of July Congressional Recess Social Media Engagement Week, July 1-5

U.S. Capitol

U.S. Capitol

As July 4th approaches, we have another opportunity to contact elected officials via social media during the Congressional recess (July 1 – 5) to drive home the message that medical innovation should be protected from further cuts.

Each day we will highlight a specific theme that can be customized with your statistics and patient/researcher stories. For example, on Wednesday we’ll focus on the drug discovery pipeline because basic research fuels private sector innovation which translates into new diagnostics, devices and products to improve the health of all Americans.

Follow us on Twitter @ResearchAmerica and use the hashtag #curesnotcuts to join in the national conversation. We will also be posting updates on our Facebook page and we encourage you to engage your representatives on Facebook and Twitter as well. Please take time out of your holiday weekend to help make medical and health research a higher national priority. Continue reading →

A Weekly Advocacy Message from Mary Woolley: “Ordinary Americans” at risk

Dear Research Advocate:

Yesterday, I joined Diane Rehm and other guests on her nationally syndicated radio program to discuss how sequestration impacts “ordinary Americans.” I was struck by how deep and distressing the damage is, in so many sectors, including but not limited to our own. Yet somehow the pain is not acute enough to force action.

What strikes me is how low our collective expectations have sunk when it comes to reinvigorating U.S. economic growth and prosperity. Our nation can do better; why don’t we maintain high expectations and hold our elected officials accountable for setting the policy stage to accomplish them? Policy makers should protect discretionary spending, make hard tax and entitlement reform decisions, and commit to policies that foster economic growth and societal (including health) progress. Part of that equation is ample, stable federal funding for medical research and policies that spur private sector medical innovation.

A glimmer of hope for policies creating such an environment can be seen in the Senate agricultural appropriations bill, which provides the FDA an increase of $96 million above FY13 and full access to collected user fees, previously subject to sequestration. The House also provides a modest increase for FDA. But don’t jump for joy; these increases still leave FDA worse off than FY12 and grossly underfunded. That we think of this as an increase is another example of lowered expectations. Meanwhile, the Senate 302(b) allocation levels for FY14 appropriations were adopted today. As expected, the Labor/H budget is significantly higher than the House’s. The Senate and House numbers are so far apart that reconciliation seems unlikely; the odds are still on flat funding minus sequestration. This is a low-expectation, low-outcome scenario, to be sure, and we should all fight against it. If we don’t, “ordinary Americans” will continue to suffer. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Don’t Settle for the “New Normal”

Dear Research Advocate,

Yesterday, the House passed a budget for the remainder of the fiscal year that includes this year’s cuts from sequestration along with an additional one percent across-the-board cut.  The bill now heads to the Senate for consideration, where we are likely to see higher funding levels than the House version, but with sequestration still in place. Congress seems anxious to avoid the brinksmanship and the government shutdown threats that have characterized past debates. While the less rancorous environment surrounding the CR is a welcome change, the complacency around sequestration is not.  As research advocates, we cannot let these cuts stand.

Sequestration isn’t a one-year cut, it is ten years worth of cuts, none of which are evidence-based.  We may be looking at the early stages of an elusive “grand bargain” as the president meets with Republican senators to discuss tax and entitlement reform – two key pieces for solving the deficit puzzle. Eliminating sequestration must be part of that bargain. In addition, we must ensure that funding for biomedical and health research, including the resources FDA needs to do its job, are assigned a high priority in fiscal year 2014. That should be reflected in the budget resolution and obviously in the FY 2014 funding bill.

None of this will be easy. Working together, advocates have raised the profile of medical research with policymakers and the media. We need to turn the volume up louder yet on it, while cultivating more champions in Congress.  Continuing to engage the media is part of that equation.  Some of the largest news outlets in the country including Fox News, NBC, and CBS, and a number that are new to our issue including Al Jazeera quoted Research!America when writing about sequestration’s impact on science. The Economist published a thoughtful piece about how cutting American health research will harm the world. Industry is adding its voice with an op-ed in Forbes coauthored by three legendary executives, including Research!America board member and former NIH director, Dr. Elias Zerhouni, Marc Tessier-Lavigne of The Rockefeller University and P. Roy Vagelos, Chairman of Regeneron Pharmaceuticals. I also want to highlight a letter that Dr. Herb Pardes, Executive Vice Chairman at New York Presbyterian and Research!America board member, sent to the President.  He captures the very themes that will anchor our advocacy going forward.

At the same time as policymakers were cutting federally funded research dollars, researchers were delivering another astonishing breakthrough – the real possibility of a functional cure for HIV. This remarkable achievement, bringing us a step closer to a world free from the scourge of HIV/AIDS, would not have been possible were it not for NIH funding that supported the research and development of anti-retroviral drugs. The CDC is also in the news, with troubling warnings about the spread of “nightmare bacteria” – germs that can be deadly because they are resistant to traditional medicines.  As CDC works to track and halt the spread of these germs and fulfill the numerous other public health functions for which they are responsible, the agency is not only contending with sequestration. Over the past several years, CDC has been subject to some of the deepest cuts of any health agency. Our Nation is fast approaching a tipping point.  Are public health and safety and the progress borne of medical innovation priorities, or not?

As many of you already know our annual events are coming up next week! Please join us for the Annual Meeting (free of charge to members) to hear remarks from Rep. Joe Kennedy (D-MA), a freshman member of Congress who is already championing research, and also John Crowley, CEO of Amicus Therapeutics. I hope to see you all at our Annual Advocacy Awards Dinner later that evening – seats are selling fast, but still available.

Sincerely,

Mary Woolley

Research!America Honors Senators Richard Burr and Bob Casey for Strengthening our Nation’s Commitment to Research and Development

Burr and Casey to Receive the Edwin C. Whitehead Award for Medical Research Advocacy at Research!America’s Advocacy Awards Dinner on March 13

Alexandria, Va.February 6, 2013–Sens. Richard Burr (R-NC) and Bob Casey (D-PA) will receive the Edwin C. Whitehead Award for Medical Research Advocacy for their leadership and strong support of federal and private sector medical research and innovation. Sens. Burr and Casey have worked individually and in a bipartisan manner to promote a robust medical research pipeline in the U.S. and ensure patients receive access to new, safe and effective treatments and technologies on a timely basis.

“Senators Burr and Casey exemplify what it means to be a research champion,” said Research!America Chair John Edward Porter. “They have each devoted their energies to ensuring that federal funding and policies are aligned with the goal of accelerating medical progress, from basic research to private sector discovery to timely patient access.  Congressional support for the public and private sector research pipeline is critical to capitalize on recent breakthroughs, maintain our global competitiveness as other nations dramatically ramp up their investments in medical innovation, and fight back against costly, devastating illnesses such as Alzheimer’s, Parkinson’s, heart disease and cancer.”

During their combined 14 years of experience as members of the Senate Health, Education, Labor and Pensions (HELP) Committee, Sens. Burr and Casey have championed legislation to catalyze and improve the research pipeline, and they jointly sponsored a bipartisan letter in support of research conducted by the National Institutes of Health.

Sen. Burr introduced and achieved passage of legislation to establish the National Institute of Biomedical Imaging and Bioengineering (NIBIB), which uses pioneering research to develop new technologies aimed at diagnosing, preventing and treating, among other conditions, breast cancer and spinal cord injuries. He also introduced the Promoting Accountability, Transparency, Innovation, Efficiency and Timeliness at FDA (Patient’s FDA) Act with Sen. Tom Coburn, MD (R-OK) to ensure timely patient access to new drugs and medical devices. Sen. Burr’s Biodefense and Pandemic Vaccine and Drug Development Act of 2005 allows rapid development of certain drugs and vaccines in case of a pandemic or natural disease outbreak.

“I am honored to receive this award, but the people who really deserve it are the hard-working, dedicated and brilliant researchers and scientists in North Carolina and across the country who are making breakthroughs every day that enhance the quality of life and, in many cases, save lives,” said Sen. Burr. “They are the ones we should all be honoring.”

Sen. Casey led a bipartisan group of lawmakers in introducing the Life Sciences Jobs and Investment Act of 2011, legislation that would double the R&D tax credit for life science firms. He also introduced the Creating Hope Act of 2011, a bill to foster the development of research breakthroughs for rare and neglected diseases, such as pediatric cancers and malaria. Last year, he sent a letter to Senate appropriators to inform them of a breakthrough in genetics research and emphasize the importance of maintaining NIH funding.

“I am honored to receive the Edwin C. Whitehead Award for Medical Research Advocacy from Research!America,” said Sen. Casey. ”Pennsylvania is a leader in the area of medical research which is critical to preventing, treating and curing diseases. Medical research is also a field that employs thousands across the state and plays an important role in the Commonwealth’s economy. I believe that it is essential to continue support for medical research because of the potential health benefits for all Americans and the importance of ensuring that our nation remains at the forefront of medical innovation.”

The Whitehead Award will be presented to Sen. Burr and Sen. Casey at Research!America’s 2013 Advocacy Awards dinner on Wednesday, March 13, in Washington, DC. The program honors outstanding individuals and organizations in advocacy for medical, health and scientific research. The Whitehead Award, named in honor of Research!America’s founder, Edwin “Jack” Whitehead, recognizes exemplary leaders, particularly those in public office, who have demonstrated a deep commitment to advancing biomedical and health research as a national priority and who galvanize others in support of science.

Other Advocacy Award winners include Diane Rehm, author and host of WAMU 88.5 and NPR’s “The Diane Rehm Show”; John F. Crowley, patient advocate and inspirational entrepreneur, chairman and CEO of Amicus Therapeutics, Inc.; John Mendelsohn, MD, director, Khalifa Institute for Personalized Cancer Therapy and former president at The University of Texas MD Anderson Cancer Center; Mark Rosenberg, MD, president and CEO, The Task Force for Global Health; and the California Institute for Regenerative Medicine (CIRM).

About Research!America’s Advocacy Awards Dinner

The annual Research!America Advocacy Awards program was established in 1996 by the Board of Directors to honor outstanding advocates for medical, health and scientific research. Recognized individuals and organizations are those whose leadership efforts have been notably effective in advancing our nation’s commitment to research. This year the awards event will take place on March 13, 2013, at the Andrew W. Mellon Auditorium in Washington, DC. For more information, visit www.researchamerica.org/advocacy_awards.

About Research America

Research!America is the nation’s largest nonprofit public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, Research!America is supported by member organizations representing 125 million Americans. Visit www.researchamerica.org.

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