advocacy

I am sending my letter early this Thursday to give readers who support the NIH and FDA funding in the 21st Century Cures Act -- most of you, based on the emails and calls I’ve been receiving -- a little more time to take action. The House is slated to vote on the 21st Century Cures Act (HR 6) tomorrow. As part of the process they will first vote on amendments, including one offered by Congressman Dave Brat (R-VA-07) to eliminate the $8.75 billion in mandatory funding for NIH and $550 million for FDA. I can’t stress the importance of stopping this amendment strongly enough: opportunities like this to fund significantly more research do not present themselves often.This is $8.75 billion for...
Dear Research Advocate: Several patient groups, including Autism Speaks and the Lupus Foundation of America, were here in force this week, bringing hundreds of patients from around the nation to Capitol Hill to make their very personal, and powerful, cases for research. Their timing was perfect, as it coincided with the push for 21st Century Cures cosponsors, and subcommittee passage of the House “Labor-H” appropriations bill for fiscal year (FY) 2016, which covers funding for NIH, CDC, and AHRQ. This funding bill is definitely a mixed bag. NIH would receive a $1.1 billion increase; $100 million above the President’s budget. CDC would also receive an increase of $140 million, equal to the...
Dear Research Advocate: That so many well-informed patient advocates are working for House passage of the 21st Century Cures bill (H.R. 6) is an excellent indication of just how important this legislation is to all of us looking for answers to what (literally) ails us. This makes it all the more puzzling that there aren’t more supporters weighing in from the science community. It may be because many don’t know about the bill yet -- a preliminary report from a poll of scientists we have in the field right now shows that only one in 5 members of the science community say they have heard of the bill. If you are a researcher and a regular reader of this letter, I know you know about it! Will...
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: 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,...

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We have health challenges in this country that science will provide answers for if given the chance and we haven't given science that opportunity
Mary Woolley, President and CEO, Research!America