Tag Archives: United for Medical Research

A Weekly Advocacy Message from Mary Woolley: Uncertainty calls out for advocacy

Dear Research Advocate:

Budget Uncertainty Deepens
The House Appropriations Committee has postponed this week’s scheduled consideration of the Labor-Health and Human Services (Labor-H) funding measure. A New York Times article indicated that the bill protects NIH funding; but, given how low the overall spending number is for Labor-H, “protected” is most likely interpreted as the NIH being cut less than other agencies, themselves highly valued. The distance between the Senate (passed) and House (estimated) Labor-H appropriations — in excess of 20% — sets the stage for another continuing resolution (CR). What actually does happen next is uncertain, which is why advocacy is essential.

The Devil’s in the Details
There are so many health priorities on the line in the not-yet-official House Labor-H bill. Perennial threats are back on the table, including wholly unjustifiable underfunding of CDC, the elimination of AHRQ and PCORI, a prohibition on funding for health economics research at NIH, and more micromanagement of the NIH as well. If any or all of these issues strikes a chord with you, let us help you write a letter to your representative asking them to represent your views in Congress. Email info@researchamerica.org — one of us will get right back to you. Continue reading →

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Genome: Unlocking Life’s Code

Photo credit: Smithsonian

Photo credit: Smithsonian

This month “Genome: Unlocking Life’s Code,” first state-of-the-art exhibition about genome science, opened at the Museum of Natural History in partnership with the National Human Genome Research Institute (NHGRI). The exhibit boasts cutting-edge interactives, 3D models, custom animations and engaging videos of real-life stories. According to Dr. Eric D. Green, director of the National Human Genome Research Institute (NHGRI), one of the 27 institutes and centers that make up the National Institutes of Health (NIH), “This exhibition reflects a remarkably productive collaboration between components of two scientific icons of the U.S. government – the Smithsonian Institution and the National Institutes of Health.”

The Human Genome Project (HGP), which is celebrating its 10th anniversary, has helped researchers gain a better understanding of genes, opening pathways to new innovations for health and technology. Before the project, researchers knew the genetic basis of about 60 rare genetic diseases; when it ended the number had jumped to 2,200. Today, with research energized by the HGP, we know the genomic basis of nearly 5,000 rare disorders, according to the exhibits website. Continue reading →

Wallace Coulter Named First 2013 Recipient of Golden Goose Award

Dr. Wallace H. Coulter

Dr. Wallace H. Coulter

Coulter. Medical diagnostics.

See a link?

Coulter is one-half of Beckman Coulter, a Research!America member and a company that boasts nearly $6 billion in market capitalization. And that half of a multi-billion-dollar, multinational company began with research on paint for the U.S. Navy.

Such unlikely beginnings are the reason that Wallace Coulter has been named the first recipient of the Golden Goose Award for 2013. More winners will be named during the coming months.

The press release announcing the award explains Coulter’s research: In his time away from working for various electronics companies in the 1940s, Coulter built a lab in his garage and earned a grant from the Office of Naval Research. His task was to standardize the solid particles in the paint the Navy was using on its warships; but to do that, he first had to identify the reasons for inconsistencies among the paints.

He developed a device that would help him count the number of particles in a given volume of paint. Comparing different colors and batches would help him understand how to standardize. Continue reading →

A Weekly Advocacy Message from Mary Woolley: What’s wrong with this picture?

Dear Research Advocate:

According to our new national public opinion poll on clinical trials and related topics, most Americans are willing to share their personal health data to advance research, and 72% would be willing to participate in a clinical trial if recommended by their doctor. This complements what we know from other polling, i.e. that Americans want research to proceed at a pace of scientific opportunity. Yet we continue to lose ground in the gridlocked political environment, which, by its inaction, is dashing the hopes of patients and families anxious for new therapies and cures. What’s wrong with this picture?

It isn’t as though research hasn’t yielded both societal and economic benefits! United for Medical Research (UMR) and Battelle Technology Partnership Practice have released a report on the economic and transformative impact of the Human Genome Project, timed as we celebrate the 10th anniversary of its completion. This visionary project has resulted in wildly successful public-private partnerships, more than 4.3 million job-years of supported employment, and nearly $1 trillion in total economic impact since 1988.

The goals of the BRAIN Initiative have been compared to those of the Human Genome Project. Breakthroughs are so desperately needed to overcome Alzheimer’s and a plethora of other serious illnesses. In a recent Bloomberg View article, columnist Al Hunt points out the folly of starving research while we are faced with such major health challenges. Continue reading →

What does sequestration mean for biomedical and health research?

We’ve heard plenty in the media about sequestration’s impact to federal agencies including furloughs and short-lived—delays at airports, but how is the biomedical research community dealing with the across-the-board cuts? The word “furlough” is something you would never hear in a research lab; time-sensitive research experiments cannot simply be put on hold. So how will the shortfall in budgets be met?  Many researchers and universities are making tough decisions that could delay promising studies and result in layoffs.

Below are resources with more details about sequestration’s impact to science and the economy. 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: Stop Sequestration, Take Action TODAY

Dear Research Advocate,

The debate over how to stop sequestration rages on, with the president weighing in this week even as some influential Members of Congress hold fast to a do-nothing strategy. Now it’s time for us all to speak out! Along with our partners, we are pulling out the stops TODAY with a coordinated Day of Action. In just 10 minutes you can call and email your representatives, as well as congressional leadership. Then ask everyone in your networks — professional and personal — to do the same. Use this link to find our e-action alert and click here for access to congressional emails and phone numbers. Congress pays attention to volumes of communication; act now to assure that they know that sequestration is no way to drive the economy or improve health.

Research!America Board members and former Congressmen John Porter and Kweisi Mfume are speaking out with a timely op-ed in The HillThe bottom line? Our nation must find its way to a fiscally sustainable path without sacrificing programs that improve our health and our economic prosperity. Former Governor John Engler, CEO of Business Roundtable (BRT), is calling for a pro-growth solution to the nation’s deficit; he points out that failure to act, and moving from one fiscal crisis to another, is counterproductive to sustained growth. A new report from BRT also speaks to the importance of our nation continuing to invest in STEM education and federal R&D.

Until the sequestration battle is resolved, likely at the 11th hour as usual, the media will be hungry for stories and examples of how sequestration could affect your community or your institutions. The Boston Globe has been providing ongoing coverage of impact in the greater Boston area, but media outlets in other parts of the country have yet to follow suit. It’s time to pitch your story to the media! Fortunately, compelling data and persuasive arguments for your op-ed, article or letter to the editor are easy to come by. United for Medical Research has just released a new report detailing what’s at stake: more than 20,000 jobs and $3 billion in economic output. Science Works for U.S. has put together an excellent video resource featuring research leaders from across the country speaking out about sequestration. See also this new report from the American Cancer Society Cancer Action Network, providing chapter and verse on how federal funding pays off.

Media attention to State of the Union address on February 12 provides another opportunity to emphasize sequestration’s potentially devastating impact on research. Join Research!America and the American Cancer Society Cancer Action Network for a pre-SOTU Twitter chat on Monday, February 11, 1 to 2 p.m. ET. Visit @ResearchAmerica and @ACSCAN on Twitter to follow me and ACSCAN President Chris Hansen as we discuss important facts about sequestration and answer questions from participants. Use the hashtag #curesnotcuts in your tweets to join the conversation.

In case you missed it, Rep. Eric Cantor (R-VA) delivered a speech extolling the cost-controlling, as well as healing power, of research and called for cutting unnecessary red tape and for the repeal of the medical device tax. He described the federal government’s vital role in supporting basic medical research “appropriate.” But his remarks also called for “re-prioritizing” existing research spending, away from the social sciences. His remarks make it clear that advocates have our work cut out to connect the dots between social science research and controlling health care costs and saving lives.

Dr. Carolyn Clancy is stepping down from AHRQ after a distinguished 10-year record of improving health care delivery and ensuring that medical providers use up to date evidence-based practices. Read our press statement here. NSF Director Dr. Subra Suresh is also leaving his position. Dr. Suresh has been instrumental in fostering interdisciplinary collaborations throughout NSF and has worked to broaden participation in NSF-supported activities. You can read our press statement here. The Board of Research!America and I salute them for their outstanding public service, dedication to research and regular participation in our forums and other programs.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: New Poll – Likely Voters Say to Congress: Stay in Session, Avoid Taking Us Over the Fiscal Cliff

Dear Research Advocate,

To call attention to the unintended consequences of the sequester, we held a press briefing today in partnership with United for Medical Research. Two Members of Congress who are still in town, Reps. Ed Markey (D-MA) and Brian Bilbray (R-CA), spoke about the high priority the nation must place on NIH and about the usefulness of data from a new national public opinion poll showing that 51% of Americans say that across-the-board cuts are not the right way to reduce the deficit. To see more poll results for use in your advocacy, click here. Other speakers this morning spoke about what’s at stake for everyone who cares about the research enterprise: patient hopes for cures delayed; industries unable to create new jobs and drive innovation in frustration about U.S. policies and lack of predictability; young scientists becoming discouraged and accepting offers to work in other countries – countries that have made research a clear priority. All of this further burdens our national deficit – we need research to combat the rising cost of health care by delaying the onset of Alzheimer’s and a host of other diseases. As Rep. Markey said, it will take high energy and coordination to get our message of research as a priority heard during the lame-duck session. You will be hearing more from us about how to assure that happens, but in the meantime, don’t forget that there is an important election going on (see below).

First a quick recap of what sequestration means, according to a new OMB report. Most agencies would be hit with an 8.2% cut – NIH alone would lose $2.5 billion in 2013! It is still unclear what level of discretion agency heads would have in carrying out these cuts. Losses at the CDC would be $464 million, the FDA would lose $318 million, and the NSF would be cut by $577 million. See our new one-pager with the latest data.

There is an additional dimension to the FDA cut that should be of significant concern to all advocates for medical progress. Part of the cut diverts industry-supplied user fees into deficit reduction. Those fees are paid by industry for the express purpose of ensuring FDA has the resources to review new medicines and medical devices on a timely basis. The precedent of playing bait and switch with user fees is a dangerous one, particularly since these fees are voluntary. Why should the drug and device industries agree to pay user fees in the future knowing that still more time will be lost in approvals – and patients will be forced to wait longer for new treatments and cures. We must work together to address it.

We all need to do our part to make sure the media is covering all the aspects of the threat of sequestration, making it more evident to all Americans just what is at stake. We’ve already seen National Journal release an article about our new polling data. The Atlantic released a story about how sequester would impact science budgets, citing another recent article from ScienceInsider. The Scientist also reported on the story, quoting Ellie Dehoney, our VP for policy and programs. This week, the Rochester (MN) Post-Bulletin reported how the cuts at NIH could impact the Mayo Clinic, a Research!America member. For those of you that may have contacts with local or national media, now is the time to let them know about the impact where you live.

We are only a month and half away from the election. We know from many of our members and partners that they are calling/writing/emailing campaigns to urge participation in the Your Candidates –Your Health voter education initiative. Please join the momentum and help drive the campaign … we don’t have much time left to make it clear to candidates that it isn’t only lobbyists and professional advocates (people like us at Research!America) who care about research and want them to talk about it. Every candidate should be hearing from hundreds of concerned stakeholders. Make sure you are in that number!

Demonstrations of the value of NIH and NSF research will soon be honored by Research!America member FASEB. Submit events, exhibits or web-based outreach that highlight the value that research agencies deliver and compete for a cash prize! For details, click here.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Congress is back and there is lots to talk about

Dear Research Advocate,

Congress is back in Washington but still in campaign mode, making its decisions with the election very much in mind. A 6-month continuing resolution (C.R.) is expected to pass momentarily. The C.R. would put off appropriations decision-making until the new Congress has gotten under way, flat-funding the government through March of next year at fiscal 2012 levels. The atmosphere of fiscal uncertainty for the agencies that fund research, and everyone seeking that funding, is in fact demoralizing in the extreme. Compounding the problem is that the C.R. does nothing to address the looming problem of sequestration, which is scheduled to take effect on January 2, 2013. The administration is slated to release a report tomorrow detailing how the sequestration cuts would be implemented at the department and agency level; it is unlikely to single out research and innovation for special protection. Thus it is more important than ever that our stakeholder community unite in a call to stop sequestration. We encourage you to join us and other members of the United for Medical Research (UMR) coalition on September 20 in a press conference at the National Press Club at 9:30 a.m. Please RSVP to sbauer@gpgdc.com.

Last week, a timely op-ed by Michael Milken in the The Wall Street Journal highlighted the wondrous medical advances and economic prosperity that have been made possible through investments in research. The op-ed coincided with the Milken-sponsored Celebration of Science, a weekend-long series of discussions and other events shining a spotlight on the multifaceted contributions of science to the well-being of Americans and populations throughout the world. In the course of the proceedings, both Senate Majority Leader Harry Reid (D-NV) and House Majority Leader Eric Cantor (R-VA) spoke forcefully about the high priority the nation must place on medical research.

On Tuesday this week, the Albert and Mary Lasker Foundation announced the recipients of the prestigious Lasker Awards – often referred to as the ‘American Nobels’ – which will be presented in New York City later this month. The accomplishments of these awardees exemplify the power of research to unlock knowledge that is of invaluable benefit to society. Mary Lasker, a founder of Research!America, lives on with her hard-hitting message: “If you think research is expensive, try disease!” For timely information on the costs of disease as well as the value and promise of research, see our fact sheets. Use them in your advocacy!

Three other media pieces this week were timed for Congress’ return. Our Your Candidates-Your Health ad is running in Politico now. Use it to leverage your request to candidates to tell us all what they will do to make research a priority. A Washington Post op-ed co-authored by Rep. Jim Cooper (D-TN) and Research!America board member and AAAS Executive Director Dr. Alan Leshner fights back against kneejerk reactions to research based on the name of the project and/or the misconception that science is a mechanical process rather than an iterative, dynamic one. The American Association for the Advancement of Science (AAAS) and others have come together to recognize outstanding researchers whose contributions belie their detractors with the first Golden Goose Award ceremony.

With her letter in the The Wall Street Journal, Ellen Sigal, chairman and founder of Friends of Cancer Research and a Research!America Board member, emphasizes that the views and values of patients must be taken into account when FDA makes the risk vs. benefit calculations that factor so importantly in drug approval decisions. She points out that “risk” is in the eye of the beholder when a new drug is the last and best hope for a terminally ill patient. It is a welcome development that more patients and patient groups are stepping up to take their rightful place in the research process, ultimately driving it across the finish line faster. Patient engagement with Congress has always been high impact; now we need it to influence candidates to make medical progress a top national priority.

Sincerely,

Mary Woolley