advocacy

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: 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...
Calls for greater federal investments in science and innovation are gaining momentum among Members of Congress and influencers. The nation’s leaders from across the political spectrum continue to push for more federal investments in research at this critical time as the government spends less on science as a percentage of GDP than it did 40 years ago. Research!America has collected recent quotes from opinion leaders and decision-makers. The quotes speak to their support for increasing science and research funding, and emphasize the importance of speaking out on this issue. To view the quotes, click here .
Dear Research Advocate: The first 100 days of the 114th Congress have come and gone. In a national poll Research!America commissioned in January, we asked how important it was for the new Congress to take action in the first 100 days to assure more rapid discovery, development, and delivery of treatments and cures for diseases. More than a “super-majority” of Americans - 67% to be exact - said congressional action was important. Now that those 100 days have elapsed, the question is: what happened? Plenty. The 21st Century Cures initiative, a bipartisan effort to strengthen and speed the discovery, development, delivery feedback loop that drives medical progress, transitioned from discussion...
Dear Research Advocate: At Research!America’s annual meeting yesterday Alex Silver, co-founder and CEO of the Epidermolysis Bullosa Research Partnership (EBRP), a member of Research!America, made a strong case for venture philanthropy as a common-sense approach to investing in research, particularly as it applies to rare diseases. He challenged us to think in new ways about nonprofit organizations, ways that reinforce both partnership and innovation. Patients like his 7-year-old son Jackson, for whom every day is a painful challenge, are waiting. (For more on spending on research as an investment vs. spending for consumption, see Norm Augustine’s timely essay .) Also at the annual meeting,...
Dear Research Advocate: What’s the “right” amount of taxpayer funding for medical and health research? What are the ‘right’ policies for science? We are asked these question regularly. The announcement yesterday by Harold Varmus that he will leave the National Cancer Institute (NCI) at the end of this month reminded me that in Science in 1993, Dr. Varmus and fellow Nobel Laureate Michael Bishop, along with their then-colleague at the University of California, San Francisco (UCSF), Mark Kirchner, set forth an 11-point prescription for science policy. It is worth re-reading their approach to a set of problems that bear a striking similarity to those we face today, e.g: “The last decade has...
Dear Research Advocate: Appropriately, it was Jack Valenti, prominent former president of the Motion Pictures Association of America, who recommended to politicians that every speech should include the six words: “let me tell you a story.” Stories have impact in ways reports do not. Eddie Redmayne as Stephen Hawking, a theoretical physicist diagnosed with a form of the motor-neuron disease amyotrophic lateral sclerosis (ALS), in The Theory of Everything , and Julianne Moore as Dr. Alice Howland, a fictional linguistics professor diagnosed with early onset Alzheimer’s, in Still Alice , were Academy Award winners last Sunday evening. These films grappled with devastating diagnoses for the...
We are pleased that the President’s FY16 budget proposal calls for the elimination of sequestration and starts an overdue conversation about better aligning resources for public health and medical progress, given their importance to the American people and to the health of our economy. It is critical that we ramp up initiatives that focus on precision medicine, Alzheimer’s, antimicrobial resistance and other growing health threats, but these investments should supplement, not supplant, the imperative of making up for a decade’s worth of lost ground. We believe that Congress and the White House can, and must, unify behind the vision encapsulated in the bipartisan Accelerating Biomedical...
Today, Research!America urged the 114th Congress to take action on five science priorities in the first 100 days of the legislative session in order to elevate research and innovation on the nation’s agenda: Advance the 21st Century Cures Initiative. Spearheaded by Representatives Fred Upton (R-Mich.) and Diana DeGette (D-Colo.),the initiative is a promising step in the right direction, focusing on speeding medical progress from bench-to-bedside by integrating patient perspectives into the regulatory process, modernizing clinical trials, and reducing red tape, among other things. Repeal the medical device tax. A provision in the Affordable Care Act, efforts to repeal the medical device tax...

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Sidebar Quote

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