Monthly Archives: September, 2013
A Weekly Advocacy Message from Mary Woolley- Warning: A government shutdown could be dangerous to your health
Dear Research Advocate:
Congress is on the brink of forcing a government shutdown on Tuesday, October 1. The implications of a shutdown are being subsumed by coverage of the political theater taking place. That is an injustice to Americans, who will be affected. History is illustrative on this point.
During the 1995 and 1996 shutdowns, the NIH turned away new patients at the Clinical Center. Research studies housed at federal institutions ceased for the duration of the shutdown; researchers and leaders of industry, academia as well as in government agencies were unable to plan effectively, wasting time and money; the CDC was forced to stop disease surveillance programs, leaving us unacceptably vulnerable to emerging health threats and even pandemics; NSF could not release grant funds, resulting in a backlog of thousands of proposals, and those were just a few of numerous effects. Compounding the impact this time around is the costly toll that sequestration — on top of a decade of stagnant funding — has already taken in undermining the promise of research and innovation.
A recent New York Times op-ed by Thomas Friedman that was published in other newspapers underscored for me exactly how high the stakes are right now, and a Roll Call op-ed by Morton Kondracke provides additional context. These two voices are prominent among this week’s sampling from an increasing number of informed individuals who are articulating what all the trends show: the US is on a path to scientific, and potentially general, decline. Add to this that the US is already ranked far below where we should and aspire to be in health indicators. The question is: why are these twin realities not receiving more attention from our elected officials? Too few Americans are demanding common sense from Washington; please raise your voice louder and longer, and do it now. Then urge everyone in your network to do the same. Help us deliver this message to your members of Congress — we want #curesnotcuts! Continue reading →
Excerpt of an article by Ariana Eunjung Cha, published in the The Washington Post.
A year ago, Yuntao Wu was on a roll. The George Mason University researcher had just published a study hailed by the scientific press as “groundbreaking” that reveals why HIV targets only a specific kind of T-cell and, separately, found that a compound in soybeans seemed to have promise for inhibiting infection.
These days, Wu — one of thousands of scientists who lost his grant in the wake of sequester cuts — says he spends much of his time hunched over a desk asking various people and organizations for money.
The deep across-the-board cuts in government spending that took effect March 1 have sent shock waves through the nation’s research labs, delaying research and forcing layoffs.
The budget for the National Institutes of Health, the world’s largest funder of biomedical research, shrank 5.5 percent. The National Science Foundation budget was trimmed by 2.1 percent. Research funding for the Centers for Disease Control and Prevention, NASA, the defense and energy departments, and other parts of the government that conduct research also were cut significantly.
The sequester has affected all parts of the government but the impact has been especially painful to those in biomedical research, where federal investment in inflation-adjusted dollars has decreased every year since 2003.
Describing the scientific and medical community as “deeply demoralized,” NIH Director Francis Collins said in an interview that the budget cuts are delaying innovation and resulting in more American lives being lost. Continue reading →
Dear Research Advocate:
With only eleven days until the end of the fiscal year, Congress has yet to pass a continuing resolution (CR) to fund the government past September 30. The House is expected to vote on, and pass, a bill that does not include funding to administer Obamacare as part of their “CR;” the Senate and the President will not agree, thus almost certainly forcing a government shutdown.
The issue of what to do about sequestration is almost certainly not going to be resolved as part of negotiating this short-term CR. That means we must continue to fight for action, and there has been a flurry of advocacy on Capitol Hill. This included, but was certainly not limited to the inaugural class of our Postdoctoral Advocacy Academy, who visited their Members’ offices to share stories of how sequestration has impacted their work and careers. And yesterday, Research!America’s Chair, former Congressman John E. Porter, gave the “go get ‘em” charge at the Rally for Medical Research Hill Day. Thanks to the leadership of the American Association of Cancer Research (AACR), the day attracted more than 150 organizations, with more than 225 survivors and other advocates from more than 40 states descending on Washington. Also this week, the AACR released their third annual Cancer Report, demonstrating the tremendous return on the nation’s investment in basic research. Continue reading →
Last week, we held our inaugural Advocacy Academy, bringing 12 postdoctoral researchers from across the U.S. to Washington, D.C. A two-day advocacy training program that culminated in Congressional visits with the participants’ representatives. We selected this group of motivated and concerned early-career scientists from a diversity of institutions, including Northeast Ohio Medical University, UCSF, Memorial Sloan-Kettering Cancer Center, Baylor College of Medicine, the University of Pennsylvania School of Nursing, Johns Hopkins University, Weill Cornell Medical College, the University of Washington and Banner Sun Health Research Institute, Eli Lilly and Company, as well as local researchers at the National Cancer Institute and National Institute of Allergy and Infectious Diseases. For these young researchers, sequestration and budget cuts have clamped down on available resources to investigate diseases in the lab and raised concerns about the viability of a future career in research. Feeling compelled to take action, these postdoctoral research fellows came to Washington to convey the personal and societal importance of medical and health research. And they did a terrific job. Continue reading →
Research!America’s National Health Research Forum — held September 12 at the Newseum’s Knight Conference Center in Washington, DC — examined the current and future state of research to improve health. This year’s theme was “Straight Talk about the Future of Medical and Health Research.” Three expert panels delved into different aspects of the research ecosystem.
Research!America’s president and CEO, Mary Woolley, and chair, The Honorable John Edward Porter, opened the program. Porter introduced Bart Peterson, JD, senior vice president of corporate affairs and communications at Lilly who delivered a brief keynote speech.
“We developed an innovation ecosystem, and that ecosystem requires sound public policy. From the private sector perspective, that includes solid intellectual property protection; a fair, rigorous, transparent regulatory system; a market system of health care delivery and pricing that offers choice for patients and health care providers,” Peterson said. “But the public sector has a role far beyond just producing sound public policy … Public funding for research, which is so threatened today, is absolutely critical to the future and we care about that as much from the private sector perspective as anybody else does.”
The first panel, focusing on biomedical research and development, was moderated by journalist Eleanor Clift of Newsweek and the Daily Beast and featured John Crowley, president and CEO of Amicus Therapeutics and a patient advocate; William Hait, MD, PhD, global head of R&D at Janssen Pharmaceuticals; Margaret Hamburg, MD, commissioner of the Food and Drug Administration (FDA); and Peterson. The discussion centered on innovation within the pharmaceutical industry and the relationship between companies and regulators. Continue reading →
Excerpt of an op-ed by American Heart Association President Mariell Jessup, MD, published in the Huffington Post.
Countless songs, stories and poems pay tribute to the hurt we suffer from a “broken heart.” The anguish is all too real for the tens of millions of Americans who’ve experienced the pain that occurs when a heart truly fails.
My patient, Tony Costanza, is one such person. In 1981, when Tony was 55, he began having trouble breathing. His “huffing and puffing” finally forced him to see a cardiologist. He was diagnosed with congestive heart failure, a life-threatening condition in which a weakened heart can no longer pump oxygen-rich blood through the body. Patients experience fatigue from oxygen deprived muscles and breathing problems from congested lungs filled with the blood backing up behind the weak heart. Tony was put on medication and told to refrain from work and get plenty of rest. He describes the fretful days and sleepless nights that followed as “one of the most frightening periods in my life, where all I heard was my heart pounding hard in my chest.”
If current trends continue, there will soon be millions more people like Tony in the United States. A study released this spring by the American Heart Association concluded that the number of people with heart failure is projected to climb 46 percent from 5 million in 2012 to 8 million in 2030 as a consequence of our aging population. The costs to treat these Americans could more than double in the same period, from $31 billion to $70 billion. This would cost every taxpayer $244 annually to care for these patients. What can we as a nation do to help treat and “mend” these “broken” hearts? In my view, the best and only way forward is by finding new ways to treat and prevent heart failure, and this starts with the kinds of medical research funded by the National Institutes of Health (NIH).
Read the full op-ed here.
Dear Research Advocate:
I am sending out my letter early this week so that you can plan now, if you are not able to be with us in person tomorrow in Washington, to join us electronically for our National Health Research Forum. With the theme of “Straight Talk,” our first-rate panelists will speak candidly about where our medical and health ecosystem is headed today — what the possibilities are, if we give research and innovation every chance to succeed — and what the policy and funding challenges are as we go forward. We thank Lilly, our lead sponsor; all our additional sponsors; and WebMD for live-streaming the event on their website at www.webmd.com/researchforum.
On the funding front, Congress may soon consider a simple, short-term continuing resolution (CR) to fund the government at levels slightly lower than the current FY13 level (that means including the sequestration hit), lasting until mid-December. There are no riders or mandates that affect NIH — or any other agency for that matter. In the end, it’s likely that this CR will pass both chambers. But the fight to end sequestration continues, and an action opportunity may present itself with discussions spurred by the debt limit. We are planning our advocacy accordingly and will keep you in the loop.
Finally, I’d like to extend warm congratulations to the 2013 Albert and Mary Lasker Foundation award winners. These impressive scientists and philanthropists have worked tirelessly to advance basic and clinical medical research and ensure that research reaches those in need. These prestigious awards are well-deserved.
Clinical research is key to saving lives, lowering health care costs and reducing waste and inefficiencies in our health care system. To highlight the latest insights from prominent health and research leaders, The Association of Clinical Research Organization has launched a new video series about the importance of clinical research. In the latest installment, John Lewis, Vice President of Public Affairs interviews Research!America president and CEO, Mary Woolley about what’s next for research, the public perception of clinical trials and how we should encourage more minority participation in clinical trials. According to a recent Research!America poll, altruism is a strong motivating factor for clinical trial participation in the general population and more so among several minority groups. To view the series, check out @ACROHealthChannel.
The Albert and Mary Lasker Foundation has announced the winners of its 2013 Awards:
- Richard H. Scheller (Genentech) and Thomas C. Südhof (Stanford University School of Medicine) will receive the Albert Lasker Basic Medical Research Award for discoveries concerning rapid release of neurotransmitters, a process key to the way our brain cells communicate.
- Graeme M. Clark (emeritus at University of Melbourne, Australia), Ingeborg Hochmair (MED-El, Innsbruck, Australia) and Blake S. Wilson (Duke University) will receive the Lasker~DeBakey Clinical Medical Research Award for the development of the modern cochlear implant — a device that allows the profoundly deaf to hear.
- Bill Gates and Melinda Gates will receive the Lasker~Bloomberg Public Service Award for inspiring philanthropy addressing the most pressing global health concerns. Continue reading →
Dear Research Advocate:
Although Congress officially returns next week, many Members are back in Washington as the debate about the crisis in Syria commands center stage. Members also face looming fiscal deadlines, with only nine legislative days scheduled in September to act on those and a large backlog of other legislation. Given all this, it is not hard to predict how Congress will handle the long- or short-term budget resolutions, debt ceiling, the future of sequestration, tax and entitlement reform, and a myriad of other interconnected items: They will put off decision-making.
Thus a continuing resolution (“CR”), extending FY13 budgets, looks likely, once again kicking the can down the road and, in doing so, kicking patients and researchers alike into the ditch. And things will be worse than the terrible FY13 numbers, given that the Budget Control Act mandates less discretionary spending in FY14 than in FY13 — almost certainly prompting agencies to further decrease their spending while waiting for what might well be a still-lower final appropriations bill (more details here.)
This adds up to “a dark future for science” according to NIH Director Francis Collins. He and other leaders of science believe that the nation is increasingly underprepared to meet existing — not to mention emerging — health threats. Now is the time to hold Congress accountable for avoiding a dark future by making your voice heard. Click here to send a message to your representatives that medical research at NIH, CDC and our other health research agencies must be championed in the upcoming fiscal debates — not cut, not put on hold, but prioritized, championed. After participating online, magnify your voice as a broad coalition joins forces on September 18 to participate in the American Association for Cancer Research’s Hill Day, urging Congress to champion the National Institutes of Health. Continue reading →
We Need to Make that Happen
Congress will be making funding decisions for all or part of FY14 in September, and it may also decide whether to eliminate, modify or simply leave in place the annual, arbitrary budget cuts known as sequestration. If we want the federal government to continue to adequately seed the research pipeline so that researchers can find treatments and cures for deadly diseases like cancer and Alzheimer’s, Congress needs to hear from us. Now. Tell your representatives in Congress to speak out and fight for the National Institutes of Health, the Centers for Disease Control and Prevention, and the other health agencies that spur medical progress and safeguard the health and safety of Americans day in and day out.
Take action here.
By Kathryn L. Kelley, Chief Advancement Officer at The Ohio State University College of Nursing.
Mary Woolley, president and CEO of Research!America, is a guest of the popular “Viewpoints of Innovative Healthcare Leaders,” podcast beginning Wednesday, September 4. She spoke about the lower purchasing power of NIH research dollars now compared to 20 years ago and the great need for everyone (especially researchers) to speak out about the value of research for understanding health.
The Ohio State University College of Nursing’s biweekly podcast series hosted by Bernadette Melnyk, PhD, RN, CPNP/PMH-NP, FNAP, FAAN, dean of the college and university chief wellness officer, spotlights top experts and helps inform listeners on best practices and emerging thoughts in the healthcare and medical fields.
When the podcast series was launched in May 2013 to positive response, Melnyk stated, “I am excited by the opportunity the College of Nursing has to share nuggets of wisdom from innovative healthcare leaders on health and wellness and how we can transform the health of Americans. This outreach to executives, nurses, and other healthcare professionals across the country will help us reach across disciplines to share insights and radical solutions for improving healthcare.” Continue reading →