medical research

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...
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. 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...
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...
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, PhD 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...
A lab-turned-hospital for mice in Boston is helping researchers understand cancer in humans. Jessica Rinaldi for The New York Times Maybe this sounds like the opening line to one of those wasteful-spending reports, but it’€™s not. And the results ’€” while still a long way from producing a treatment ’€” have allowed researchers to gain insight into the links between cancer and a handful of mutated genes. New York Times reporter Gina Kolkata describes the ’€œhospital’€ at Beth Israel Deaconess Medical Center: imaging devices writ small with a dedicated pharmacy and clinical lab. She follows researchers that are looking into prostate cancer. Mice are injected with a few rogue genes, and...
Dear Research Advocate: According to our new national public opinion poll on clinical trials and related topics, most Americans are willing to share their personal health data to advance research, and 72% would be willing to participate in a clinical trial if recommended by their doctor. This complements what we know from other polling, i.e. that Americans want research to proceed at a pace of scientific opportunity. Yet we continue to lose ground in the gridlocked political environment, which, by its inaction, is dashing the hopes of patients and families anxious for new therapies and cures. What’€™s wrong with this picture? It isn’€™t as though research hasn’€™t yielded both societal and...
Only Small Percentage say Health Care Professionals Have Ever Talked to Them about Medical Research ALEXANDRIA, Va. – June 12, 2013 – More than two-thirds (72%) of Americans say it’s likely they would participate in a clinical trial if recommended by their doctor, but only 22% say a doctor or other health care professional has ever talked to them about medical research, according to a new national public opinion poll commissioned by Research!America. A wide majority (80%) say they have heard of a clinical trial – more than half (53%) through the Internet and only 24% from a doctor or other health care provider. Only 16% of those polled say they or someone in their family have ever...
By Megan Kane, PhD Megan Kane As reported on Research!America’€™s blog and in numerous media channels, scientists are facing a difficult funding environment made even worse by sequestration. I am one of the members of the ’€œentire generation of scientists at risk’€ that NIH Director Dr. Francis Collins and others have referenced in their warnings about the long-term harm of sequestration. Due to tightening budgets in research laboratories, I was forced to make a decision earlier this year: either delay my graduation from my doctoral program or look for immediate employment outside of a lab environment and possibly never get back to the bench. A colleague pointed me to the advertisement...
This post is an excerpt of a Bloomberg column by Albert R. Hunt on how sequestration hurts medical research, especially in the fight to better understand’€”and hopefully cure’€” Alzheimer’€™s disease. Albert R. Hunt Many Republic ans, and Democrats, never thought the automatic across-the-board spending cuts known as sequestration would take effect. After all, they might produce dangerous, if unintended, consequences such as potentially bankrupting the U.S. health-care system, along with millions of families. Typical Washington hyperbole, right? It actually is happening under sequestration, which kicked in three months ago, a product of America’€™s political dysfunction. Because the cuts...
Dear Research Advocate: On Wednesday, the House Appropriations agriculture subcommittee approved the funding bill that includes the Food and Drug Administration. The bill allocates nearly $100 million above the post-sequester levels. Unfortunately, the baseline budgets in the House are so low that this increase is still lower than FY12 FDA funding. We must not fall into the trap of lowering our expectations and applauding an artificial victory. The true mark of success is funding that keeps up with need. We must keep working. As demonstrated particularly by the 18.6% cut targeted for the House LHHS appropriations FY14 budget, the pressure to shrink government by slashing discretionary...

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Without research, there is no hope.
The Honorable Paul G. Rogers