Dear Research Advocate, A recent New Yorker cartoon speaks volumes. The scene is the local high school science fair, and the (captionless) image is of the winning entrant, surrounded by his (sic) disappointed brethren, who are scowling at the entrepreneur in their midst. The blue ribbon has been awarded to "How to Monetize Other Kids' Science Projects." Is our cultural obsession with entrepreneurism good news? Several contemporary news items, as well as thought pieces, raise aspects of this question. This is more than a little relevant to the future of science and what we want from science. It is now received wisdom that the economic value of science is responsible for half the growth of US...
Hardly anyone knew that 28-year-old Monique Gore-Massy was sick on her wedding day in 2008, but just two months earlier, she had been diagnosed with lupus. Before then, Monique had been coping with symptoms such as fever, chronic body pain, swelling of her joints, hair loss, shortness of breath and mouth sores without understanding why. First she was prescribed antibiotics and then told she was suffering from a viral infection. After nearly a year of confusion and misdiagnosis, Monique was finally diagnosed with lupus. Unfortunately, Monique’s experience is all too common. A recent study found that a majority of people with lupus surveyed (63 percent) reported being incorrectly diagnosed...
Dear Research Advocate, I am pleased to repeat myself when I report that it’s been another science-heavy week on Capitol Hill...and most, but not all, of the news is good. This morning, the Energy and Commerce Committee passed (51-0, a tremendous bipartisan victory) the 21st Century Cures Act with new mandatory funding for FDA, and with the NIH Innovation fund intact...and both are paid for! Representatives Upton (R-MI-06) and DeGette (D-CO-01) kept their word and managed, in an extraordinarily tight fiscal environment, to negotiate viable supplemental funding for federal agencies pivotal to medical progress. I am not saying the bill is perfect, nor arguing that stakeholders should support...
Dear Research Advocate: Today the Energy and Commerce Health Subcommittee considered the 21st Century Cures Act . This bill, in the making for over a year, is now officially 'out of the starting gate' and under consideration by our elected representatives. After a unanimous vote for approval in the subcommittee, a full committee markup is planned for next week. In advance of the subcommittee's consideration, Research!America organized a group sign-on letter expressing support for the NIH Innovation Fund included in the bill. Our thanks to the 187 organizations within and outside of the Research!America alliance who participated! As the bill moves through the legislative process in the House...
Dear Research Advocate: The five-year, $10 billion Innovation Fund for the NIH included in the second draft of the 21st Century Cures bill has generated enthusiasm...and confusion, primarily because an authorizing committee is calling for a mandatory appropriation. For those interested in understanding this and other distinctions on the fund, please click here . Whether you delve into the details on the Innovation Fund or other aspects of the draft now, later or never, the 21st Century Cures initiative is important for its focus on speeding medical progress. We have held two meetings for Research!America alliance members to discuss the initiative. During yesterday's meeting, the...
Precision medicine is yielding promising results in treatments of certain diseases, including cancer and cystic fibrosis. It takes a greater and sustained national commitment to accelerate progress that accounts for individual variability in the genes, environment, and lifestyle of each person, and move the concept into clinical practice to benefit more patients. One such commitment has been made by President Obama through the Precision Medicine Initiative, with a $215 million investment in the President’s FY16 Budget. One immediate goal of the Initiative is to significantly expand efforts in cancer genomics to shape the development and use of some cancer treatments. The NIH Innovation Fund...

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