Monthly Archives: June, 2013

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: Help set our nation’s sights high on the Fourth of July

Dear Research Advocate:

Setting our nation’s sights high, rather than watching Rome burn; that’s the advice embedded in a recent op-ed authored by John R. Seffrin, PhD (CEO of the American Cancer Society and Research!America Board Member) and Michael Caligiuri, MD (CEO of the Ohio State University Comprehensive Cancer Center – James Cancer Center Hospital and Solove Research Institute). The authors advocate establishing a national plan, one that puts political differences aside and focuses on combating deadly and tremendously costly disease.

There is a compelling argument to be made that if our nation wants to sustain a balanced budget, it must deploy a disease moonshot. If our nation wants to protect the health and safety of Americans, lead medical progress instead of abandoning it, and fix the debt, health and medical research must be treated as a top national priority. Advocacy is a path that can take us there, if enough of us travel it and we raise our voices loud enough. Join us next week as we continue our national “#curesnotcuts” social media campaign during the 4th of July Congressional Recess. Check here for more information including sample messages. An article in the Portland Tribune and the ongoing regional radio interviews that I’m conducting over the recess are examples of recent media that effectively frame what’s at stake.The goal is to keep research in the news and in the hearts and minds of our nation’s decision-makers. Continue reading →

Global Disparities in Tuberculosis Treatment Highlight Need for More Research

We are reminded yet again why global health issues matter for Americans with recent news coverage of a possible tuberculosis outbreak at a Virginia high school that may have affected over 430 faculty and students. Health officials are recommending that all individuals at the school be tested for the disease.

Courtesy of CDC/ Dr. Ray Butler

Tuberculosis bacteria
Photo credit: CDC/ Dr. Ray Butler

Historically, tuberculosis has been the world’s greatest infectious killer, taking an estimated billion lives over the past 200 years. Tuberculosis remains a global threat today – in 2011 alone, the disease sickened 8.7 million people. Even more alarming is the rise of drug-resistant forms of the disease. WHO estimates that more than 5% of TB patients worldwide have multidrug resistant (MDR) TB, meaning that typical frontline drugs will not be effective. Because it is often expensive to test for drug-resistance, only a handful of patients are appropriately diagnosed so many experts estimate that this number may be even higher. Doctors are also discovering cases of extensively drug resistant (XDR) TB in which patients do not respond to a majority of existing drugs. Continue reading →

Member Spotlight: The TMJ Association

TMJ AssociationThe TMJ Association, Ltd. (TMJA), a Research!America member, was founded in 1989 in Milwaukee, WI by two TMJ patients. The organization’s mission is to improve the quality of health care and lives of everyone affected by Temporomandibular Disorders (TMD), commonly called TMJ. TMD are a complex and poorly understood set of conditions characterized by pain in the jaw joint and surrounding tissues with limitation in jaw movements. TMD pain may range from mild discomfort to severe and intractable accompanied by jaw dysfunction necessitating a feeding tube for sustenance. For many sufferers, their ability to chew, swallow, make facial expressions, and even breathe is limited. It is estimated that over 35 million Americans suffer from TMD; the majority are women in their childbearing years.

With no scientific guidance and no research into treatment strategies, health care providers are incapable of making evidence-based treatment decisions for TMD patients. The result has been more than 50 unproven treatments — including drugs and surgery — recommended to TMD patients. When treatment goes awry, pain and dysfunction worsen. So the need for research remains paramount. The only entity currently funding TMD research in America is the National Institutes of Health (NIH). Continue reading →

How the Sequester Hurts Cancer Patients

By John Seffrin and Michael Caligiuri

An excerpt of an op-ed by John R. Seffrin, PhD, CEO of the American Cancer Society Cancer Action Network and Research!America Board member, and Michael A. Caligiuri, MD, director of the Ohio State University Comprehensive Cancer Center and CEO of the James Cancer Hospital and Solove Research Institute published in U.S News & World Report.

 

Michael A. Caligiuri, MD

Michael A. Caligiuri, MD

John R. Seffrin, PhD

John R. Seffrin, PhD

Clinical trials are often a patient’s only viable treatment option for surviving cancer – a disease that kills 1,500 people every day in this country. But haphazard federal budget cuts, a consequence of the so-called “sequester” that was initiated in March, threaten to stall or eliminate critical clinical trials nationwide and further threaten important basic laboratory research. For the one in two men and one in three women in America who will hear those three most dreaded words, “You have cancer,” in their lifetime, research provides more than the promise of new treatments and therapies; it offers hope for beating a disease that was once considered a virtual death sentence.

The Ohio State University’s Comprehensive Cancer Center-James Cancer Hospital and Solove Research Institute conducts groundbreaking clinical trials for cancer research. Due to mandated federal budget cuts earlier this year, the National Cancer Institute was already forced to reduce by half the number of participants in clinical trials at OSU. Under sequestration, these trials will likely be completely eliminated this year, affecting patients undergoing treatment for leukemia, lymphoma, breast cancer and a variety of other forms of cancer. Continue reading →

America’s Health Rankings Senior Report Released

UntitledThe United Health Foundation recently released their first-ever comprehensive report on the health of America’s senior population.  According to a statement from the authors Reed Tuckson, MD and Rhonda Randall, DO, “The report provides a comprehensive analysis of senior population health rankings on both national and state levels, and it comes at a critical time.  Americans are living longer but sicker lives, and America’s senior population is poised to grow 53 percent between 2015 and 2030.”  This fascinating report ranks each state by the incidence of several factors, including obesity, physical inactivity, low-care nursing, and food insecurity.

The United Health Foundation, a Research!America member, is dedicated to creating a healthier America and, through this report , the authors have released some disturbing data.  For example, over a quarter of seniors are obese which places them at far greater risk of debilitating diseases such as diabetes, hypertension, and certain cancers.  Obesity, which was recently declared a disease by the American Medical Association, is also commonly linked to poorer health status and premature death.  It is imperative that we work to reverse these trends as our population continues to age and place a greater burden on the healthcare system.  Click through the report and see how your state ranks in the health of its seniors. Continue reading →

Genome: Unlocking Life’s Code

Photo credit: Smithsonian

Photo credit: Smithsonian

This month “Genome: Unlocking Life’s Code,” first state-of-the-art exhibition about genome science, opened at the Museum of Natural History in partnership with the National Human Genome Research Institute (NHGRI). The exhibit boasts cutting-edge interactives, 3D models, custom animations and engaging videos of real-life stories. According to Dr. Eric D. Green, director of the National Human Genome Research Institute (NHGRI), one of the 27 institutes and centers that make up the National Institutes of Health (NIH), “This exhibition reflects a remarkably productive collaboration between components of two scientific icons of the U.S. government – the Smithsonian Institution and the National Institutes of Health.”

The Human Genome Project (HGP), which is celebrating its 10th anniversary, has helped researchers gain a better understanding of genes, opening pathways to new innovations for health and technology. Before the project, researchers knew the genetic basis of about 60 rare genetic diseases; when it ended the number had jumped to 2,200. Today, with research energized by the HGP, we know the genomic basis of nearly 5,000 rare disorders, according to the exhibits website. Continue reading →

Wallace Coulter Named First 2013 Recipient of Golden Goose Award

Dr. Wallace H. Coulter

Dr. Wallace H. Coulter

Coulter. Medical diagnostics.

See a link?

Coulter is one-half of Beckman Coulter, a Research!America member and a company that boasts nearly $6 billion in market capitalization. And that half of a multi-billion-dollar, multinational company began with research on paint for the U.S. Navy.

Such unlikely beginnings are the reason that Wallace Coulter has been named the first recipient of the Golden Goose Award for 2013. More winners will be named during the coming months.

The press release announcing the award explains Coulter’s research: In his time away from working for various electronics companies in the 1940s, Coulter built a lab in his garage and earned a grant from the Office of Naval Research. His task was to standardize the solid particles in the paint the Navy was using on its warships; but to do that, he first had to identify the reasons for inconsistencies among the paints.

He developed a device that would help him count the number of particles in a given volume of paint. Comparing different colors and batches would help him understand how to standardize. 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 →

Raising Awareness of PTSD Throughout June

PTSDToday is Post-Traumatic Stress Disorder Screening Day, one of the key days in National PTSD Awareness Month. If you think you might be suffering from PTSD, the Department of Veterans Affairs’ National Center for PTSD is an excellent resource to consult.

And that makes sense: PTSD is most commonly associated with the military. Troops returning from far-flung theaters, having experienced the uncensored horrors of war, are prime candidates to develop PTSD. It’s estimated that 1 in 5 veterans of the wars in Iraq and Afghanistan — 300,000 in all — have been diagnosed with PTSD.

PTSD is hardly limited to the military. Victims of abuse or assault and people closely affected by serious accidents or natural disasters are also most likely to develop PTSD. (If you’re looking for more background, our friends Josh and Chuck at “Stuff You Should Know” produced a podcast on PTSD in late May.) Continue reading →

Member Spotlight: Parkinson’s Action Network

The genesis of the Parkinson’s Action Network goes back to 1987, four years before the organization’s founding. That year, Joan Samuelson left a career in law after being diagnosed with Parkinson’s disease; she threw her might into advocating for people living with Parkinson’s. Four years later, PAN was born, and its successful advocacy continues today.

Parkinson’s Action Network

The Parkinson’s Action Network (PAN) is a unique organization in the patient advocacy world. PAN represents the entire Parkinson’s community on funding and quality of life policy priorities for those living with the disease. PAN works with other national Parkinson’s organizations and is the only organization addressing government programs and policies that impact the Parkinson’s community.

“We’ve worked on a vision that if our community came together on policy issues, with one, singular voice, we would be much more effective,” said PAN CEO Amy Comstock Rick, JD, who became a Research!America Board member in March. “Really in the last 10 years, we’ve been able to effectively achieve that mission so that PAN is the only organization in the Parkinson’s community that works on policy issues, even though we have a number of national organizations.” Continue reading →

Expanding U.S. Commitments to World’s Most Neglected Patients

ntd briefing 007

NTDs briefing

On Monday, June 17, Research!America hosted a Hill briefing, “The Role of the U.S. Government and the Case for Scaling Up Treatment and Accelerating Innovation for the World’s Most Neglected Patients.” The event was sponsored by Reps. Lucille Roybal-Allard (D-CA) and Karen Bass (D-CA) and hosted in partnership with Drugs for Neglected Diseases initiative (DNDi), Global Health Technologies Coalition (GHTC), The American Society for Tropical Medicine and Hygiene, and Doctors Without Borders/Médecins Sans Frontières (MSF).

Kaitlin Christenson of GHTC served as the event’s moderator. Other panelists included DNDi’s Rachel Cohen; Brian D’Cruz, MD, of Doctors Without Borders; and Laurence Buxbaum, MD, PhD, of the Philadelphia Research and Educational Foundation.

The event began with a video from MSF that drew attention to neglected tropical diseases (NTDs) and the world’s most neglected patients that suffer from them. A panel discussion followed and Brian D’Cruz shared his personal experiences treating patients with NTDs in rural parts of Africa. He spoke of the difficulties in using current tools to treat patients, particularly in trying to perform procedures like spinal taps in communities with no sanitation or running water systems. In addition to the logistical difficulties, some of the existing drugs can be toxic or lead to extreme side effects that discourage patients from finishing their treatments. To cure these diseases and provide the best quality of care to neglected patients, new tools must be developed. Continue reading →

Your Data Matters. But So Does Your Story.


A tenet of Research!America’s advocacy has always been to implore scientists to tell their stories – not their data. Stories connect with other people, i.e., non-scientists, in a way that data cannot. A hundred heartfelt words do more than 100 million data points.

We know this because people, i.e., non-scientists, have told us. They have demonstrated it to us.

Alan Alda’s improv classes at Stony Brook University turned scientists into storytellers. We’ve heard from Members of Congress that stories keep them engaged. And if that’s not enough, we have an in-person demonstration from part of the crew at the traveling show/podcast called The Story Collider.

Ben Lillie, PhD, is the co-founder and director, and Erin Barker is the senior producer for the show that brings stories of science to the public. During a recent talk at TEDMED, first noted at io9.com last week, Lillie explains the stress and anxiety of earning a doctorate in theoretical physics from Stanford University – and it’s easy to imagine that stress, right? Continue reading →

Invest in America’s health

By Olivera J. Finn and Robert E. Schoen

An excerpt of an op-ed by Olivera J. Finn, PhD a distinguished professor and chair of immunology at the University of Pittsburgh School of Medicine and Robert E. Schoen, MD, MPH professor of medicine and epidemiology at Pitt’s School of Medicine and Graduate School of Public Health published in the Pittsburgh Post-Gazette.

Olivera J. Finn

Olivera J. Finn, PhD

Robert E. Schoen, MD, MPH

Robert E. Schoen, MD, MPH

Every day, physicians and scientists see the hope and promise that medical research brings to patients and families. For nearly 70 years, research funded by the National Institutes of Health has increased understanding of the causes of disease, contributed to longer life expectancy and improved the health and well-being of all Americans. With such a proud record of economic and social benefit, it is shocking that the House Appropriations Committee has proposed a drastic cut of nearly 20 percent to NIH funding in 2014. This outrageous proposal must be stopped.

Research is a dynamic process. New, life-improving advances are constantly within reach — but only with uninterrupted effort, commitment and funding. NIH Director Francis Collins says these cuts would be a “profound and devastating” blow at a time of unprecedented scientific opportunity. Continue reading →

Investments in Research Reduces Injury and Violence

By Frederick Rivara, MD, MPH. Rivara is President of Society for Advancement of Violence and Injury Research (SAVIR). Dr. Rivara holds the Children’s Guild Association Endowed Chair in Pediatrics, and is a University of Washington professor of pediatrics and an adjunct professor of epidemiology. He  is also Editor of JAMA Pediatrics.

Frederick Rivara, MD, MPH

Frederick Rivara, MD, MPH

More than 400 public health researchers and practitioners participated in the 2013 National Meeting of the Society for Advancement of Violence and Injury Research (SAVIR) and Safe States Alliance. Hosted in Baltimore by the Johns Hopkins Center for Injury Research and Policy, this event focused on how research and practice have contributed to reducing injury and violence in this country over the last twenty years while at the same time calling attention to the pressing needs of today and tomorrow.

Speakers provided compelling examples of how investments in the science of injury prevention and control have paid off in lives saved. For instance, the tools of epidemiology were instrumental in establishing the heightened risk of death among infants in the years before car seats were mandatory – in fact, epidemiologists, physicians, and advocates working together used that science to change laws and educate parents so that today using infant car seats is almost universal in the United States. Continue reading →