Mary Woolley

This op-ed appeared online on Roll Call July 31, 2015. New technology such as CRISPR-Cas9, a genuine scientific breakthrough, is raising hope for patients with cancer, cystic fibrosis, sickle-cell anemia and other major health threats. The gene editing tool, used in precision medicine, allows changes to be introduced into the DNA of any living cell— potentially enabling repair of disease causing mutations, neutralization of disease carrying insects, and much more. This technology, developed with support from the National Institutes of Health (NIH) and National Science Foundation (NSF), is an example of the realization of the promise of innovative research funded by our federal science...
Dear Research Advocate, The “moment” for research that we’ve been experiencing on Capitol Hill is being echoed by Presidential candidates; is this perhaps the start of a wave of conversation on the campaign trail? On Tuesday, the Senate Commerce Committee, which is not the committee of jurisdiction for NIH or FDA, or intellectual property, held a hearing on these very topics. Committee Chairman and Presidential candidate Ted Cruz (R-TX) framed the hearing as an opportunity to explore strategies for speeding cures to patients. The hearing might have devolved into an “FDA regulation is bad” fest, and to be honest there was some of that, but the Senators present, along with the witnesses,...
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...
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...
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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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