Monthly Archives: December, 2014

A Weekly Advocacy Message from Mary Woolley: 2015: Pragmatism over politics

Dear Research Advocate:

As America rings in the New Year, many of us will be reflecting on the past and making resolutions for the future. To get a feel for the numerous ways in which NIH, CDC, AHRQ, NSF and FDA contributed to the well-being of Americans and others throughout the world in 2014, click here. I hope lawmakers are taking time now to establish New Year’s resolutions and set priorities for the new Congress, which convenes one week from today. My biggest wish for the new Congress?  Pragmatism over politics. If pragmatism rules, the next Congress will shake off the stultifying complacency that is weighing our nation down and act to reignite U.S. innovation. More here.

One reason pragmatism is so crucial is that it accommodates complexity. It would be terrific if the benefits of medical research and innovation could be catalogued like books in the library, but as Norm Augustine explains in The Journal of Clinical Investigation, no can do. The quantifiable benefits of research can stretch so far into the future and be so wide-ranging that it is nearly impossible to fully capture them. And not all the benefits are quantifiable. Policymakers are understandably interested in hard data to help predict the return on federal investment, but that doesn’t mean the value of science can’t be meaningfully conveyed to them. Norm’s commentary is an important reminder that as advocates, we should be prepared to defend science against inadequate estimates of its impact. It also speaks to our role in bridging the distance between scientific progress and such human values as compassion, empathy and curiosity. Pragmatic means logical and reasonable, not “monetizable.”  Continue reading →

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Federal Health Agencies 2014 Year in Review

Photo credit: NIH.gov

Photo credit: NIH.gov

From advances in diabetes research to record approval of drugs to treat rare diseases, taxpayer funded research and the effective employment of regulatory tools played a significant role in improving the health and wellbeing of Americans in 2014. Below is a year-end roundup of research highlights and scientific achievements from the National Institutes of Health, Centers for Disease Control and Prevention, National Science Foundation, Food and Drug Administration and Agency for Healthcare Research and Quality.

To fuel this momentum in scientific discovery and development, policymakers must commit to robust funding for the federal health agencies and policies that support private sector innovation. Take action today and tell your elected officials to make research for health a higher national priority in the 114th Congress.

30th Anniversary of the Alta Summit

Myers, Rick-fancy photo-Aug14-8-big smile

Richard M. Myers, Ph.D., president of the HudsonAlpha Institute for Biotechnology

Guest contributor — HudsonAlpha Institute for Biotechnology

Thirty years ago, in December 1984, Richard Myers, a young postdoctoral scholar at the time, joined 18 other researchers at the Alta ski resort near Salt Lake City, Utah. Unbeknownst to the scientists convened there, this meeting, organized by the Department of Energy and the International Commission for Protection Against Environmental Mutagens and Carcinogens, would lay the foundation for what would soon become an international effort to sequence the entire human genome. The participants had gathered to discuss the repercussions of an event nearly 40 years earlier: was it possible to track radiation-induced mutations in the DNA of the descendants of those exposed to the atomic bomb in Hiroshima and Nagasaki? At the height of the cold war, the question was pressing. For how many generations did the echo of such radiation exposure linger?

The answer, unfortunately, was elusive. Technology at the time was too limited to accomplish such a task. But discussions at the small meeting, which came to be known as the Alta Summit, sparked one of the most massive, most successful and most expensive biological research endeavors in history — the Human Genome Project.

Now the director and president of the HudsonAlpha Institute for Biotechnology in Huntsville, Ala., Myers and the other researchers played a pivotal role in the subsequent sequencing effort. Myers co-led one of the first human genome centers in the U.S., and his lab, together with the newly formed Joint Genome Institute in Walnut Creek, Calif., was responsible for sequencing about 11 percent of the genome, including all of chromosomes 5, 16 and 19.

HudsonAlpha is continuing the mission set forth 30 years ago, to improve human lives by applying what we learn from the study of genomics to patient care and to improving our natural resources. In the 30 years since the meeting, researchers have not only learned the entire sequence of the three billion nucleotides that make up the human genome, but they’ve also sequenced thousands of other species. They’ve learned to compare and contrast genome sequences among and within species to trace evolution’s winding path, and they’ve begun to shine a light on what has been called the “dark matter” of human DNA. They’ve compared populations from around the globe to discover ethnic and racial differences critical to the success of personalized medicine, and they’ve learned new ways to improve crop productivity to feed an ever-growing world.

“The HudsonAlpha Institute rests on the foundation established by the Human Genome Project,” said Myers. “A major focus of the institute is to use the subsequent advances in sequencing technology to make a difference in human health and disease, including brain diseases, cancer, autoimmune conditions and heart disease. Last year alone we analyzed more than 2,500 whole human genomes. We collaborate with hundreds of scientists across the globe, and have launched more than 2,000 projects with groups around the world. All this was unthinkable 30 years ago.”

The scale of possibility at HudsonAlpha shows how far the technology has come. The institute recently purchased 10 ultra-high-throughput sequencers from Illumina, Inc. Together, the sequencers can sequence about 18,000 human genomes each year, at a cost of about $1,500 each.

“As always, HudsonAlpha is focused on collaboration and data sharing,” said Myers. “We don’t function as a silo; we spread the information around. We’re also heavily committed to the idea of public and private collaboration. HudsonAlpha presents a unique model of a nonprofit research institute. We actively recruit private companies to share our space, and we now have 27 here with us. There’s a lot of cross pollination that occurs, when our faculty members interact with the company researchers.

“I can’t believe how much faster and easier it’s been in the six years that I’ve been a part of HudsonAlpha. We’re extremely excited at the potential to transform human health and crop biology. We are still growing and working to be on the front of the discovery wave.”

For more information about HudsonAlpha Institute for Biotechnology, please visit our website and stay connected with us via Facebook, Twitter and LinkedIn.

A Worthy New Year’s Resolution for the New Congress

Excerpt of an op-ed by Research!America President and CEO Mary Woolley published in the Huffington Post

mary-woolley-webAs the new Congress sets priorities, there are strong indications that the political climate is ripe for a surge in science. Bipartisan support for the 21st Century Cures Initiative, a comprehensive study of roadblocks to medical innovation and development of new disease therapies and treatments, is slated to move forward with draft legislation early next year. The measure is expected to address six areas of reform: integrating patients’ perspectives into the regulatory process, modernizing clinical trials, fostering the future of science, investing in advancing research, incentivizing the development of new drugs and devices for unmet medical needs and supporting digital medicine. Research stakeholders ranging from academia to industry to patient groups are working closely with the architects of this initiative, Chairman Fred Upton (R-Mich.) and Rep. Diana DeGette (D-Colo.), to ensure the measure will remove barriers to getting new treatments and cures to patients more quickly.

There is also bipartisan support to reform tax legislation, a light or heavy lift depending on the tax package. All signs point to a repeal of the medical device tax in the new Congress but the jury is still out on whether the R&D tax credit can be made permanent and ultimately whether Congress is ready to tackle tax and entitlement reform overall. A favorable tax climate and strong investments in research are critical to improving our population’s health, boosting the economy and spurring further private sector innovation. With sustained federal funding at risk in a deficit reduction environment, alternative funding models to augment appropriations should be considered including but not limited to a mandatory trust fund dedicated to steady growth in research.

Read the full op-ed here

A Weekly Advocacy Message from Mary Woolley: The end of an era? Let’s hope.

Dear Research Advocate:

I don’t always dwell so much on Congress-related actions (or the lack thereof), but this time it’s essential given all the year-end/Congress-end action. So bear with me; it’s important to the future of health and our nation’s prosperity. The “Cromnibus” narrowly passed Congress and has now been signed into law. As I emphasized in last week’s letter, this bill is too little, too late in a multitude of ways, but it’s better than a shutdown, or a year-long continuing resolution. More to the point is that Congress didn’t do better. Members of Congress can allocate more funding to medical research and science and technology broadly. Congress can alter tax and other public policy to more robustly fuel innovation. Taken together, these actions have historically – and can again – grow our still-struggling economy. Along with our partners, all well-aware of the promise of science and of the very real costs of slowing the science enterprise, we will be working in the new year to change the conversation around research and innovation. More to come on that. Continue reading →

Statement by Research!America President and CEO Mary Woolley on the Confirmation of U.S. Surgeon General Vivek Murthy

We applaud the confirmation of Dr. Vivek Murthy as U.S. surgeon general, a visionary thinker who is well-equipped to assume the role of America’s doctor. Throughout his career he has demonstrated a strong commitment to improving public health and unwillingness to accept the status quo: invaluable traits for such challenges as combating Ebola, the obesity epidemic, tobacco-related disease and other complex health issues that confront our nation. His determination to hit the ground running to address health disparities and reduce the stigma of mental health, with a clear understanding of the role of science and innovation in improving health outcomes, is also critically important to advancing public health. We look forward to working with Dr. Murthy to alleviate health threats that impact the health and well-being of all Americans.

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A Weekly Advocacy Message from Mary Woolley: “Congress: Strong letter follows… “

Dear Research Advocate:

So much is troubling our nation – evidenced in protests of recent grand jury decisions and the controversy over release of the Senate’s report on the CIA – that most people probably haven’t noticed or cared that the Congress is delaying and may even abort action on the long overdue funding of the federal fiscal year that began on Oct. 1.  People have grown tired of Congress missing self-imposed deadlines, only to say they can only act in the face of those deadlines, and now they are talking of doing it again.  And thus we are lulled into thinking it doesn’t matter what the Congress does.  But that would be wrong: priority-setting by the Congress plays a major role in determining the economic security and health status of the nation and everyone in it.

Right now, Congress is keeping the nation in limbo, and not just when it comes to funding deadlines. “How low can we go” does seem to be the theme of the appropriations process. If the currently negotiated plan is adopted and signed into law – and that is a big if – the good news is that one-time supplemental funding will be allocated to NIH, CDC and other agencies to work on advancing Ebola-related research and clinical trials. That aside, NIH and CDC would receive razor thin increases compared to FY14, as noted in our statement about the “Cromnibus.” NSF and FDA fare slightly better with increases reaching the level of full percentage points, 2.4 percent and 1.4 percent, respectively. AHRQ is slated to receive a decrease of .08 percent, but, importantly, the agency will at long last be given budget authority, i.e., will not have to rely on passing the hat, so to speak, to other agencies to help fund it. Now Congress must take AHRQ to a higher level of support if we are ever to get our arms around inefficiencies in health care delivery. Continue reading →

Statement by Research!America President and CEO Mary Woolley on FY15 Cromnibus Spending Bill

The tiny increases included in the “Cromnibus” bill for the National Institutes of Health (NIH) and our nation’s other health research agencies are just that. The underwhelming support for the NIH, the Centers for Disease Control and Prevention, the National Science Foundation and the Food and Drug Administration following years of stagnant funding and budget cuts begs the question – how low can we go, given health threats the likes of which stand to bankrupt the nation?  And the decision to flat-fund the Agency for Healthcare Research and Quality does not provide what it takes to reduce the much-complained of inefficiencies in our health care system. The pain and economic drain of one disease alone – Alzheimer’s – is not going to be effectively confronted without stronger investments in research. Every American who wants to see our nation overcome health threats, create jobs and shore up our economy for sustained prosperity must make it clear to the next Congress that it can and must do more, making research and innovation a strategic national priority.

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A Weekly Advocacy Message from Mary Woolley: This just in: Congress busy meeting long-expired deadlines

Dear Research Advocate:

Congress is working to reach agreement to fund the government for FY15. Recall that the federal fiscal year 2015 began on Oct. 1, but that deadline was not met. Instead, a continuing resolution (CR) was enacted to keep the government from shutting down. Missed deadlines and CRs have now been the pattern of many years’ standing, despite rhetoric about the importance of a “return to regular order.” Instead of regular order we have “kick the can down the road,” again and again.

It seems increasingly likely that Congress’ current appropriations negotiations will produce a hybrid omnibus and CR (a “CRomnibus” for fans of linguistic portmanteau!) which includes all the spending bills for federal funding except those that relate to immigration. (Those accounts will be funded solely on a short term basis in order to afford the new 114th Congress an opportunity to re-evaluate immigration-related funding early next year.) Neither an extension of the full CR nor a CRomnibus will improve the dismal status quo for science funding. Please urge your Member of Congress to pass full appropriations legislation for FY15, rather than another standing-in-place CR, by clicking here. Continue reading →

Why support Research!America

In honor of #GivingTuesday, Jayme and Julie talk about their experience working at Research!America to help boost federal support for medical research and innovation.

Jayme Hennenfent , D.V.M., M.S.

JaymepicI was honored to embark on a science policy fellowship at Research!America because I know firsthand how crucial funding is to the discovery process. My alma mater, The University of Illinois at Urbana-Champaign, is a preeminent research institution, spending over a half a billion dollars on science and technology research annually. However, even powerhouses like this are not immune to the current struggle for project funding support, which I personally observed when I saw world-class researchers dedicating more and more of their time towards the grant application process, and less to scientific discovery. Towards the end of my study there, I became increasingly interested in how policy and science intersect, and in turn, how important a scientific perspective can be in policy development. Research!America brings a wealth of scientific perspective to their fight for progress in medical science, through dedicated leadership and permanent staff, as well as fellows and interns who get the opportunity to learn about the policy process up close. It feels great to work in this environment where they are so passionate about both the policies and the science they support!

Jayme Hennenfent is a Science Policy Fellow at Research!America. She is a 2014 graduate of the University of Illinois at Urbana-Champaign, holding a doctoral degree in veterinary medicine and a master’s degree in microbiology.

Julie Babyar, R.N., M.P.H

JulieWe all have family, friends and acquaintances that depend on a strong medical research infrastructure to make their future better. In order to ensure a promising future, I strive to understand all aspects of health care in various sectors.

I chose to apply for an internship with Research!America because I believe it to be one of the best organizations for medical research advocacy and policy. Increasing constraints alongside multiple agendas in the field of medical research call for opportunities for a unified voice. Research!America historically and presently represents this voice. It is an organization where the mission statement truly matches both employee and member actions, and thus it is an organization shaped in sincerity. The mentorship and education provided to me has been invaluable. Continue reading →

Get Involved and Give Back with #GivingTuesday

GT LNo doubt you’ve heard of Black Friday and Cyber Monday: two days following Thanksgiving when Americans go holiday shopping in stores and online for the best bargains.  But have you heard of #GivingTuesday, a day dedicated to giving back? On Tuesday, Dec. 2, organizations, families, businesses, community centers and students around the world will come together for one common purpose: to use social media to stimulate generosity and giving. Research!America is a partner of #GivingTuesday and throughout the last weeks of 2014, we will be encouraging people to support our mission by making a donation to our organization.

While #GivingTuesday is one day dedicated to encouraging people to make a donation to a cause they care about, Research!America will be using social media throughout the month of December to call people to action: under-investment in research and public health can’t continue! We hope you too will use the hashtags #GivingTuesday and #ReasonsforResearch and link to our donation page during the month of December to help us spread the word.

To view, link to or make a contribution to our donation page, visit www.researchamerica.org/supportourwork.

World AIDS Day 2014: Focus, Partner, Achieve: An AIDS-free Generation

World AIDS day, commemorated each year on Dec 1, aims to raise awareness about the virus, encourage advocates to redouble efforts to fight the epidemic, and remember those who have died and continue to suffer from the disease.

Photo credit: cdc.gov

Photo credit: cdc.gov

The 2014 World AIDS day theme “Focus, Partner, Achieve: An AIDS-free Generation,” speaks to how combined efforts and collaborations can bring us closer to a cure or vaccine. For example, public and private-sector funded research led to the development of Highly Active Antiretroviral Therapy (HAART), which revolutionized the battle against HIV/AIDS according to Research!America’s HIV/AIDS fact sheet.

Medical research has played a critical role in reducing the risk of transmission and has led to new drugs that have transformed HIV/AIDS from a fatal to a chronic illness for millions worldwide. Patients like Maria Davis, professional entertainer and HIV/AIDS advocate, has benefited from advances in HIV/AIDS treatments.

Research!America member, amfAR, The Foundation for AIDS research and The Centers for Disease Control and Prevention are raising awareness on World AIDS Day by providing up-to-date resources and information describing the human and economic impact of HIV/AIDS. In FY14, U.S. federal funding to combat HIV/AIDS here and abroad and assist those affected by the disease totaled $29.5 billion, but more resources and funding are needed to tackle this global epidemic. Tell Congress that we need more funding for HIV/AIDS research today!

To find out more about the events happening on Dec. 1, visit http://aids.gov/