Tag Archives: Francis Collins

A Weekly Advocacy Message from Mary Woolley: The president delivers a charge to the science community

Dear Research Advocate,

President Obama spoke to the National Academies of Science on Monday. I commend his remarks to you. He charged the members of the Academy, and by extension the science community writ large, to engage at “the center and the heart of our public debate.” He said that IF scientists do so, the nation will be assured of continued prominence. IF is a tall order — it makes most scientists very uncomfortable, but it is essential that we get out of our comfort zone right now. The president didn’t pound his fist on the podium in stressing this, so I will. The science community simply cannot step away from the public and political fray right now; not if we want to see the end of sequestration and not if we want to hear no more talk, such as has become more serious this week, of upending peer review.

Draft legislation from Rep. Lamar Smith (R-TX), chair of the House Science Committee, would do just that. The bill in its current form would require the NSF director to certify that all grants meet certain criteria before providing funding for a project, effectively adding another layer of review for research projects and overriding current NSF guidelines. The committee has released a statement on the proposed legislation. You can view the legislation here and send your feedback to the committee using this link.

We continue to beat the drum in the media about the foolishness of sequestration, including in a Marketplace radio broadcast on NPR stations. Also this week on NPR, an interview with NIH Director Dr. Francis Collins highlighted sequestration’s impact on medical research and the challenging career pathway for young scientists. This is the time to accept the president’s charge and join in at the heart and center of the public dialogue — make a point, today, of reaching out to local media. Sequestration is going to stay in the news for awhile; science will not be part of the story unless the advocacy community speaks out.

Many of you have attended our annual Advocacy Awards dinner held in March each year. We are fast approaching the deadline for nominations for our next Advocacy Awards, which will mark our 25th anniversary celebration! Please take a moment to browse the categories and nominate an individual, or an organization, who should be recognized for outstanding advocacy. There are no Nobel Prizes for advocates; recognition by the Research!America alliance is the next best thing! Contact Barbara Love with any questions about the nominations process.

Next Thursday, May 9, Research!America is co-sponsoring a discussion on healthy aging across the lifespan. The event will feature a variety of speakers including Susan Dentzer, a Research!America Board member. I hope you can join us! You can find more information and RSVP here.

Sincerely,

Mary Woolley

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Coalition for Health Funding visits freshman members of Congress

HillBuildingOn April 24th, representatives from members of the Coalition for Health Funding gathered on Capitol Hill to visit with Members of Congress. As a member of CHF, Research!America participated in these informational visits with offices of freshman Congressmen and Senators. The theme of the day was “health is everywhere,” and advocates sought to communicate the important role of health and research in the lives of Americans and in our economy.

During the meetings, advocates spoke about how adequate funding for agencies like the Centers for Disease Control and Prevention, the National Institutes of Health, the Agency for Healthcare Research and Quality and others can help address soaring health care costs including Medicaid and Medicare expenses. Continue reading →

Watch the Rally for Medical Research

Just because you’re not in Washington, DC doesn’t mean you can’t still watch the Rally for Medical Research! Cokie Roberts of National Public Radio will emcee the event featuring members of Congress, cancer survivors like actress Maura Tierney (ER, NewsRadio), leaders from the scientific community including NIH Director Francis Collins, MD, PhD, and  Research!America Chair, Hon. John Edward Porter.

Here’s the video:

Take a moment and contact your Congressperson and Senators today, tell them to make medical research a higher national priority!

Follow updates from the Rally on Twitter via @ResearchAmerica or #RallyMedRes.

President Obama announces BRAIN Initiative

President Barack Obama unveiled the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative on Tuesday. Described in a White House press release as one of the administration’s “Grand Challenges,” the goal of the initiative is to bring private and public sector research together to accelerate the development and application of technology and research into the function of complex neural networks. President Obama laid the ground work for today’s announcement during his State of the Union address in January, calling for an increased investment in research to achieve “a level of research and development not seen since the height of the space race.” Continue reading →

A Weekly Advocacy Message from Mary Woolley: Continuing Resolution Passes; Sequestration Unaffected

Dear Research Advocate,

Congress has passed a spending bill for what remains of the current fiscal year, which ends September 30. Preliminary agency funding levels have been reported by Nature. The appropriations process remains important for making up some small amount of the ground lost to sequestration, but as long as sequestration remains the law of the land, annual cuts to NIH, FDA and our nation’s other health research agencies are all but assured; and with it, the insidious ripple effect of damage to grantees, vendors, and the pharma, bio and device industries that partner with researchers to develop the products patients await. That’s the bottom line. We must remind our representatives that sequestration is not some “new normal” we will adjust to, it is a costly mistake! We must remind them that the longer it takes to correct that mistake, the more damage will be done.

As this letter is written, the Senate is debating a budget resolution for FY14. One or more amendments related to NIH are likely to be considered. While it is unlikely any of these amendments will result in increased funding next year – they are likely to be symbolic in nature – we should not dismiss them as unimportant. Singling out medical research funding for consideration and discussion during the budget debate lays the groundwork for more concrete action going forward. As does Congresswoman Allyson Schwartz’s (D-PA) introduction of a stand-alone bill, the “Inspiring Scientific Research and Innovation Act,” calling for a stunning $3 billion increase to NIH funding. Prospects for this bill are slim, but if enough advocates urge their representatives to fashion similarly bold statements of support of this nature, we can turn this around.

American priorities and American progress are on the line more than ever, yet Congress persists in acting like political parties scoring points instead of conducting the public’s business. This point and more were addressed by Research!America’s chair, The Honorable John Porter, at our Advocacy Awards dinner. Many of you have asked to see this speech, which was highlighted in Roll Call. Please contact policy makers to speak out against sequestration; better yet – contact them today and then go visit them in-district next week while they are on recess. Many of our members have or will soon engage in “Hill Day” visits with many advocates – and the timing could not be better. Our fact sheet on sequestration as well as the flyer we developed calling for cures, not cuts, are both good leave-behinds.  Developing new champions is one goal of those Hill Days, I know. Yesterday, in partnership with United for Medical Research, we held a breakfast meeting for freshman Members of Congress to meet NIH Director Dr. Francis Collins. Dr. Collins provided an overview of the opportunities for research and highlighted the challenges facing NIH, including sequestration. Please be sure to thank those who attended and use the opportunity to reinforce the local case for research.

Making the local case is equally if not more important in district as well as on Capitol Hill. This is where the media can amplify the story. Dismal news about the impact of sequestration on our nation’s world class universities is in fact being heard nationwide. Johns Hopkins University’s Dr. Carol Greider, a former Research!America Board member and Nobel laureate, was quoted in Reuters about the cutbacks her lab has faced, which have prevented her from hiring promising young researchers. An article in Fox News cites concerns from Research!America Board member Dr. Larry Shapiro, who is witnessing anxiety among young researchers at Washington University School of Medicine in St. Louis.  Dr. Arthur Levine of the University of Pittsburgh writes in the Pittsburgh Post-Gazette about the staffing cuts and job losses that could occur, with some of the worst impacts hitting young investigators. The media remains hungry for stories about the impact of these cuts. Write an op-ed or pitch a story to your state or local paper. As always, let us know how we can help.

April 8 is coming right up. If you haven’t already planned to join the Rally for Research here in Washington, make it a priority. As a measure of the level of urgency of speaking out for research and against sequestration, the American Association for Cancer Research (AACR) is, for the first time ever, shutting down their annual research conference so that all 18,000 attendees can participate. And they have extended the Rally widely, to encompass all research and stakeholders in research, to present a comprehensive perspective of health research. This is the kind of game-changing advocacy called for right now. Our Board Chair, Congressman John Porter, will be speaking at the event along with other advocates. The challenges and opportunities before us demand not just a team effort, but a HUGE team effort. Lend your talent and your time. We’ll drive across the goal line together.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: When “kicking the can down the road” is better than the alternative

Dear Research Advocate,

Medical research advocates are being heard by those urging a halt to across-the-board budget cuts scheduled to go into effect March 1; your voices are being picked up in the media and echoed by decision makers. But as the deadline approaches, no progress has been made, with many Members of Congress insisting that sequestration go forward. As much as we, and the public at large, have railed against Congress when it “kicks the can down the road,” this is a time to call for just that! Delaying sequestration would create the opportunity (of course, not the promise) of a “grand bargain” before the continuing resolution ends March 27. (In order to avoid shutting down the government, Congress must act before that date. It may be another case of kick-the-can, extending funding until the end of the fiscal year on September 30.) What advocates must push for right now is to eliminate sequestration in favor of prioritization and pragmatism. Email your representatives, sign this petition from AAAS, and stop sequestration. When you reach out to your representatives, use our revised fact sheet and make sure to highlight how sequester would impact your priorities. For other examples, see the just-released fact sheet on sequestration from The Society for Women’s Health Research (SWHR) as well as Rep. Rosa DeLauro’s report.

The House subcommittee that sets funding levels for NIH, CDC and AHRQ wants to hear from you! On March 13, the Labor, Health and Human Services, and Education Subcommittee is holding a public witness hearing. Requests to testify are due by Monday, February 25. This is an excellent opportunity to make your voice heard loud and clear on Capitol Hill. (Members of Research!America, let us know if we can help draft a request letter!)

The New York Times reported Monday that the White House is planning to launch a decade-long project led by the NIH to unravel the core functions of the brain. NIH Director Dr. Francis Collins spoke about the Brain Activity Map on PBS’s Newshour last evening. Scientists are hoping that the project will provide $300 million in funding per year for a decade or more, with the end goal of understanding what goes wrong in the brain and how this leads to some of the most insidious and expensive diseases plaguing Americans and the world. The price tag is daunting, and it will be important to ensure this project doesn’t supplant other critical research, but there is no doubt that cracking the code to the numerous diseases of the brain would be a breathtaking advance in modern medicine.

Speaking of spectacular research, the richest research prize ever has been announced. The winners will receive a prize of $3 million each in recognition of their high impact research. This headline-grabbing announcement helps put faces on science and remind the country of its value, perhaps inspiring young Americans to pursue a career in research. But awards are not enough to stop the onslaught of growing public health threats like Alzheimer’s and other diseases, especially when many policy makers are prepared to allow sequestration to occur. We need to reinvest in our innovative capacity, not cut it off at a time of immense opportunity for health breakthroughs and research-driven economic growth.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: SOTU and – now what??

Dear Research Advocate,

Setting a breathtaking goal for Congress and the nation, the president called for returning our nation to levels of R&D investment not seen since the height of the space race in his State of the Union address Tuesday evening. He spoke of the potential to defeat Alzheimer’s and to assure an “AIDS-free generation”; and he used the human genome project to illustrate the economic as well as human return on taxpayer investment in research. We were thrilled that the president listed medical research among the nation’s top priorities – along with defense, education and energy – right at the beginning of his speech, when he described the devastating damage that sequestration would do to the things the nation values most. This is, I think, an indication that the hard work of the research advocacy community in driving our research-as-a-priority message is paying off, just as we saw in media coverage of the Save Research advocacy campaign we launched after the election with many of our partners in advocacy. Our voices are being heard! It is time to thank the president, and it’s also time to urge Congress to take action. We must strongly advocate avoiding any proposal that threatens U.S. biomedical innovation, public or private sector-driven. See highlights of the science portions of the president’s speech and our press statement.

Speaking, as the president did, of Alzheimer’s, did you know that the annual cost of Alzheimer’s is $200 billion? By 2050, that number is expected to rocket to $1 trillion! To address the looming threat of across-the-board funding cuts, USAgainstAlzheimers has launched a major advocacy push, sending thousands of letters to Congress, leading a sign-on letter of researchers, and running a full-page ad in Roll Call.

As pointed out by columnist Robert McCartney in The Washington Post, television and radio this morning, biomedical research will be hurt by sequestration as much as defense, right here in the National Capital Area. He quoted NIH Director Dr. Francis Collins extensively and also cited Children’s National Medical Center’s Dr. Eric Hoffman, whose important work on muscular dystrophy has stalled as NIH has held back funding until decisions are made by Congress. Meanwhile, patients are waiting. The idea that Dr. Hoffman’s work – and all of medical research, as well as education, energy and defense and much more – is considered “discretionary” is more than revealing, it is unacceptable to Americans.

Fighting to avoid sequestration, the defense and non-defense communities held a joint event this week to highlight the dangers posed by sequestration, as reported in CQ Roll Call. Leaders from the aerospace industry along with members of the university, health, and science community released new estimates demonstrating that sequestration could rob the American economy of 2 million jobs, causing another recession. Also bringing the message home, Sen. Ben Cardin (D-MD) held a Q&A session with federal workers at the NIH, saying that sequestration would lead to the loss of 100,000 jobs, considering both Bethesda-based NIH employees and businesses that work with them.

Have you brought the message home, so that your representative and senators are hearing it and will act? We can help – contact your representatives and email our science policy director, Max G. Bronstein, to learn about other ways boost your engagement. Only 15 days until the March 1st sequestration deadline.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Inaugural topics?

Dear Research Advocate,

President Obama delivered a comprehensive plan for stemming gun violence yesterday, identifying, among other components, a renewed role for federally funded research. (Prohibitions enacted by Congress in the mid-1990s and expanded in 2011 have largely prevented federal agencies from funding firearms-related research.) An executive memorandum signed by the president on Wednesday directs CDC to conduct research on the causes of gun violence and ways to prevent it. Restrictions on research that informs federal policy are counterproductive to sound governance. With the benefit of research findings, policy makers can identify the most effective strategies for preventing firearm violence. Research!America applauds the president and joins all those who oppose restrictions on research for health. A national focus on ending gun violence will surely be a topic addressed by the president in his second inaugural address on Monday.

On the budget front, which the president will almost certainly address in his remarks, the drawn-out, kick-the-can-down-the-road approach to avoiding fiscal chaos is already taking a deep toll on our nation’s core government functions, including medical research. This message was delivered loud and clear this week in Forbes, in a piece called “Congress is Killing Medical Research” by Dr. Steven Salzberg of Johns Hopkins School of Medicine. Share this terrific editorial with your networks, and make sure your elected officials have read it too! You can use our web tool to find contact information for your federal representatives. The damage of the current fiscal situation was also called out in an article by Richard Craver in the Winston-Salem Journal, describing how Wake Forest Baptist Medical Center is being hit with a “triple whammy.”

In an interview with Politico, Dr. Francis Collins, director of the NIH, said sequestration would deal a “profound and devastating blow” to medical research. In 2011, the NIH budget was reduced by 1.5% and has continued to lose ground to inflation, which has eroded the agency’s ability to support lifesaving research by 20% since 2003. Dr. Collins also highlighted shrinking grant success rates; now just 1 in 6 applications are funded. This has a terribly demoralizing effect on young researchers and patients alike. Email your representatives now, and urge them to end sequestration once and for all.

Will the president use the platform of the inaugural address to underscore the importance of health and medical research? From preventing gun violence to ending the costly scourge of Alzheimer’s and so many other ailments, there are profoundly important reasons to assign a top priority to solutions research can and will identify, given adequate support. Advocates for research look to the president to take a leadership role; so does the American public, 72% of whom want biomedical and health research to be a priority for the president and for the new Congress in its first 100 days.

Sincerely,

Mary Woolley

Supreme Court Rejects Request to Ban Federally Funded ESCR

The U.S. Supreme Court announced Monday that it would not hear a case that challenged the legality of federally funded human embryonic stem cell research.

The case, Sherley v. Sebelius, was brought by two researchers of induced pluripotent stem cells, James Sherley, MD, PhD, and Theresa Deisher, PhD in 2009. They argued that guidelines concerning government funding of hESC, adopted by the Obama administration, were in violation of the 1996 Dickey-Wicker Amendment. The amendment forbids the Department of Health and Human Services — including the National Institutes of Health — from using appropriated funds to either create embryos for research purposes or conduct research in which embryos are destroyed.

After an initial ruling in 2010 in favor of the plaintiffs, an injunction was issued that allowed research to continue. Eventually, both the U.S. District Court for the District of Columbia and the U.S. Court of Appeals for the D.C. Circuit found in favor of the government. The plaintiffs appealed the case to the Supreme Court, which declined to hear the case and offered no further comment in Monday’s order.

Stem cell research advocates were pleased with the ruling.

“This is a major victory for scientifically and ethically responsible innovative research,” Bernard Siegel, spokesperson for the Stem Cell Action Coalition and executive director of the Genetics Policy Institute, said in a statement. “With the cloud of this case lifted, researchers can now rest assured that the challenge to the NIH’s 2009 guidelines for funding for embryonic stem cell research is over. Patients and their advocates can now rejoice that this potentially life-saving research can proceed at the federal level.”

The ruling is “a victory for scientists, patients and the entire biomedical research community. Science can now continue to move forward, knowing the threat to promising research and funding has been eliminated,” said Amy Comstock Rick, president of the Coalition for the Advancement of Medical Research, according to ScienceInsider.

In a statement, NIH Director Francis Collins, MD, PhD, reaffirmed the agency’s dedication to ESCR.

“I am very pleased with today’s decision by the U.S. Supreme Court to decline to review the Sherley v. Sebelius U.S. Court of Appeals ruling. This decision allows the ruling to stand, and enables NIH to continue conducting and funding stem cell research, following the strict ethical guidelines put in place in 2009. Patients and their families who look forward to new therapies to replace cells lost by disease or injury, or who may benefit from new drugs identified by screening using stem cells, should be reassured that NIH will continue supporting this promising research.”

A Weekly Advocacy Message from Mary Woolley: Prime Time for Research?

Dear Research Advocate,

The first presidential debate will be held Wednesday, October 3 at the University of Denver. This debate will likely be the only one in which health issues are discussed: Will the candidates talk about research and innovation in that context? This is our chance to speak up, whether they do (bravo!) or don’t (why not??). While watching, include the Twitter handle for the debates (@NewsHour) in your tweets, and afterwards, send a letter to the editor of your local paper. This is the final phase of our Your CandidatesYour Health voter education initiative. We know from experience over the years that all of us – stakeholders and advocates for research – become much more energized as the election nears. Be sure to join your colleagues and all fellow advocates in reaching out to the candidates you will see on your ballot on November 6. Tell them that knowing their views on our issues will influence your vote. In fact, don’t wait for the debate next week – follow this link and send your candidates an email today. Then, send the same link to three people you know, asking them to take action. Together, we can make research a campaign issue, building champions we can rely on in 2013 and beyond.

If you are looking for new arguments to make your case, we have recommendations for you. The Information Technology and Innovation Foundation (ITIF) has released a startling report about the long-term economic impacts of sequester, estimating that sequester could cost our economy between $203 billion and $860 billion in GDP! As if this weren’t bad enough, the cuts would result in 200,000 jobs lost in 2013 alone. You can find the full report here and watch the webcast of the report rollout here. An op-ed that appeared in The Week by former Sen. Bill Frist provides additional grist for the mill – he placed familiar statistics into context, making a compelling case for ensuring that medical research is a top national priority. One of many great quotes: “In 2010 alone, the most recent year we have accurate numbers for, medical research accounted for $69 billion worth of economic activity here in America and $90 billion worth of exports. Not to mention NIH funding alone created 480,000 new, good jobs. All in one year.”

In case you missed it, Dr. Francis Collins was on BioCentury TV this past weekend. It’s definitely a segment worth watching – Dr. Collins cites statistic after statistic demonstrating why it is so important to stop sequestration in its tracks. This Sunday morning at 8:30 a.m. ET on WUSA-9 in the D.C. metro area, Research!America Board member The Hon. Mike Castle will be on the air on BioCentury to discuss what the future may hold for research. Be sure to tune in! Indeed, many of our Board members are actively advocating for research: “Speak up now or suffer the consequences later,” said Research!America Board Chair, The Hon. John Porter, at a forum convened by the Union of Concerned Scientists (UCS) this week. Porter spoke about the consequences of apathy among scientists in a budgetary and political environment that poses dramatic risks for science, and again emphasized the importance of the coming election: “the most important in my lifetime.” Not the time for advocates to sit on the sidelines.

Several large pharmaceutical companies, including many Research!America members, have come together to form a new nonprofit to help streamline and accelerate the drug development process. Transcelerate Biopharma is the new outfit, based in Philadelphia. The aim is to develop a variety of standards to improve the efficiency of drug discovery, a pursuit that is notoriously costly and lengthy. See this recent Forbes article to learn more about Transcelerate Biopharma, ably led by CEO Garry Neil, formerly of Johnson & Johnson. In a note of synchronicity, the President’s Council of Advisors on Science & Technology (PCAST) released a new report urging FDA to speed approval of drugs for high-risk patients. For more information, read the article in the Wall Street Journal and see the full report here.

Finally, for an excellent overview of the “fiscal cliff,” see a new brief from Bloomberg Government, detailing implications for our economy and some insight into what our next Congress may look like.

Sincerely,

Mary Woolley

NIH Director, Research!America Board Member to Discuss Declining Funding for Science on BioCentury This Week

National Institutes of Health Director Francis Collins, MD, PhD, and a Research!America Board member, former Congressman Mike Castle, will appear on BioCenturyTV during the next two weeks to discuss declines in federally funded research.

“BioCentury This Week” airs at 8:30 a.m. Sundays on WUSA-9 in the Washington, DC, area. In other areas, the program is available on the show’s website at www.biocenturytv.com.

The September 23 show will feature Collins, who will discuss sequestration, NIH grant rates, ways to reduce the costs of clinical trials and the NIH’s public-private partnerships.

The September 30 show will feature Castle; Daniel Ford, MD, MPH, vice dean for clinical investigation at Johns Hopkins University, a Research!America member; and Douglas Williams, PhD, executive vice president for research and development at Biogen Idec. They will offer their solutions for science in the age of austerity, according to the show.