advocacy

Watch the videos from each panel, read the transcript , view the photo gallery and read the WebMD live recap . “The biomedical research enterprise underpins the health of the nation and much of the world, and is in dire need of substantial infusion to meet the great medical needs of our time,” said William N. Hait, M.D., Ph.D. , global head, Janssen Research & Development, LLC, one of the Janssen Pharmaceutical Companies of Johnson & Johnson, the keynote speaker at the 2016 National Health Research Forum, added that we’re losing time in addressing threats like the Zika virus, Ebola and cancer while waiting for funding to improve for biomedical research. The program, held Thursday,...
This article was originally published on Medium . Thanks to a remarkable outpouring and mobilization of rare disease advocates, August 2016 will go down in the books as the “Summer of Cures.” While our journey on the “#Path2Cures” began three years ago, many, many advocates have been fighting for cures for much longer. Together, we’ve made incredible strides in our effort to deliver #CuresNow. Every story, every single voice matters, and we are grateful for your support and willingness to share your personal experiences with disease. It’s been a tremendous effort by the rare disease community and I am proud to report that we are closing in on the finish line. But we can’t get there without...
For every 1,000 babies born in this country, one to two will have hydrocephalus, and over 1 million people in the U.S. currently live with hydrocephalus. Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles, where there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase. There is currently no known way to prevent or cure hydrocephalus and the only treatment option today requires brain surgery. The most common treatment for hydrocephalus—and the most common procedure performed by...
Dear Research Advocate: With congressional primaries back in full swing -- four states held primaries this week alone, with five more to come this month -- we have fresh opportunities to ask candidates for national office what they would do, if elected, to speed medical progress and incentivize innovation. Check out our interactive map to see what your candidates have to say -- we have been adding quotes daily. This is important: if you don’t see your candidates on the record, please send them a message urging them to register their thoughts. Research!America has joined ScienceDebate.org and other organizations to call on presidential candidates to respond to a questionnaire about...
Dear Research Advocate: The Cancer Moonshot took some exciting steps forward during a day of action that engaged more than 6,000 individuals across the nation. As Greg Simon, the executive director of the Moonshot taskforce, framed it, the moonshot is designed to “invoke systems change in the way we approach cancer.” Pursuing the goal of faster progress from a systems perspective is important, not only because it has led to promising new cross-sector, cross-functional collaborations (e.g. an Oncology Center of Excellence at FDA, new public-private partnerships), but because it may help seed a much needed change in mindset among policymakers committed to faster medical progress. There is a...
Dear Research Advocate: As we grieve the worst mass shooting in U.S. history, the spectre of more to come is deeply troubling. If there were ever a time for action by our elected officials, surely this is it. Yesterday, Senator Chris Murphy (D-CT) took to the Senate floor in a nearly 15 hour filibuster to demand action on gun reform, which ended in Republican leadership agreeing to a vote on two pieces of legislation related to gun sales. Senator Murphy was joined by many of his colleagues, including Senator Richard Durbin (D-IL), who said that the American Medical Association’s declaration of gun violence as a public health crisis is “historic,” entering their press release into the record...
Dear Research Advocate: This has been an important week for research, innovation and the power of advocacy. The Senate Appropriations Committee passed the Labor-H bill, which funds NIH, CDC and AHRQ, among other programs. The bill includes a well-justified, but nonetheless remarkable, $2 billion increase for NIH in FY17. However, CDC and AHRQ both receive cuts in the bill ($118 million and $10 million, respectively). While we applaud Chairman Blunt (R-MO), Ranking Member Murray (D-WA) and the Committee as a whole for their extraordinary determination to regrow the NIH budget, underinvesting in CDC and AHRQ is a costly mistake. Read our statement on the bill. It is important to note that...
Dear Research Advocate: It's graduation season and a time to consider the opportunities - and challenges - facing young people, our workforce, our economy and our nation. The director of the National Science Foundation (NSF), Dr. France A. Cordova challenged graduates at Rochester Institute of Technology ( video here ) to find the value in all experiences in life - even when the benefit might not be immediate - and to work with individuals from a wide variety of fields to address the grand challenges of our time. Her messages resonate as lessons learned from basic research, a venture rich in challenge, with gains not always clear at the outset, enhanced by collaborations across disciplines...
Dear Research Advocate: Every seat was taken in the main Carnegie Institution auditorium, and in a large overflow room as well, for a presentation on CRISPR genome editing delivered by Dr. Jennifer Doudna of UC Berkeley. The Monday evening program, which has open to the public, was co-sponsored by the Carnegie Institution for Science, the Council of Scientific Society Presidents and the Kavli Foundation. In addition to explaining how CRISPR-Cas9 is revolutionizing the ‘software’ of biology, Doudna reflected on ethical issues including the conduct of human germline research. In doing so she echoed one of the obstacles to advancing science listed in a slide deck presented by White House...
Dear Research Advocate: On Monday, the White House provided policymakers with an updated request for Zika funding, keeping the same top-line number of $1.9 billion but directing more resources toward vaccine research. On Tuesday, Senate Majority Leader Mitch McConnell (R-KY) told press he did not expect any opposition in addressing this “fairly significant public health crisis.” The need for Zika funding, and increased global health funding at large, was made even more evident this week with the release of a Global Health Technologies Coalition (GHTC) report outlining the need for the U.S. to robustly invest in global R&D. I had the opportunity to discuss the report with CNN -- check...

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Without continued support for health research, many of the most promising young scientists, their ideas and a myriad of potentially life-changing scientific breakthroughs will vanish into oblivion.
Paul Marinec, PhD; University of California San Francisco