Category Archives: Innovation/Competitiveness

Member Spotlight: United Therapeutics Corporation

By Martine Rothblatt, PhD, Chairman and CEO of United Therapeutics Corporation.

MRothblatt Official photo 2#59583CFounded in 1996, United Therapeutics Corporation is a biotechnology company focused on the development and commercialization of unique products to address the unmet medical needs of patients with chronic and life-threatening conditions. We have four approved products on the market today and we are not stopping there! From the United States to Europe to the Asia Pacific, we are proud of our multicultural business environment where employees can collaborate with people all over the world. As a group, we are relentless in our pursuit of “medicines for life”® and continue our research into treatments for pulmonary arterial hypertension, cancer, and some of the world’s most complicated viral illnesses.

We are proud to partner with Research!America to promote better medical advancements, biomedical research, and overall greater global health initiatives.  We have seen first-hand how tireless research and dedication to a cause can change the lives of thousands of patients and their loved ones. We began our story by conducting extensive research on a treatment for a deadly disease so rare, Pulmonary Arterial Hypertension (PAH), that other medical companies had abandoned any pursuits for treatments or a cure. Continue reading →

Statement by Research!America President and CEO Mary Woolley on 21st Century Cures Initiative Discussion Draft

The release of the 21st Century Cures Initiative discussion draft is a major bipartisan accomplishment that represents a truly remarkable diversity of innovative ideas to speed the delivery of lifesaving treatments to patients – a testament to the extraordinary commitment of Congressman Fred Upton (R-MI), Congresswoman Diana DeGette (D-CO) and their respective staff members. The Initiative could be a game changer for the medical innovation ecosystem with provisions touching on virtually all phases of the research and development pipeline – from basic and applied research, to FDA review, to coverage and access. Among the many beneficial provisions Research!America fought for is a measure to reduce the administrative burden on researchers.  We look forward to working with the 21st Century Cures team to greatly boost our nation’s commitment to groundbreaking research and drug development.

Funding research

Letter to the editor by Research!America VP of Communications Suzanne Ffolkes published in The Gainesville Sun.

In reference to the Dec. 28 editorial “Funding innovation,” countless medical breakthroughs would not have been possible without the support of federal funding. It is imperative that research and innovation become a higher national priority for the new Congress.

Bipartisan proposals to advance medical progress — like the 21st Century Cures Initiative that includes provisions to boost federal funding for research, modernize clinical trials and incentivize the development of new drugs and devices, among others — should be given serious consideration. Stagnant funding over the last decade and sequestration have taken a toll on research institutions in Florida and across the country. Continue reading →

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 →

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.

Statement by Research!America president and CEO Mary Woolley on the New Chair of the House Labor-HHS-Education Subcommittee

November 20, 2014

Congressman Tom Cole’s leadership on the Labor-HHS-Education subcommittee will help shape our ability to sustain and accelerate medical innovation as we confront health crises here and abroad. As a steward of the federal funding that lays the noncommercial foundation for private sector medical progress, Congressman Cole will play a pivotal role in determining whether our nation conquers Alzheimer’s, childhood cancer, Ebola and other insidious health threats. We commend his efforts to ensure quality health care for veterans, remove barriers to innovation through the repeal of the medical device tax and advance other health and research-related initiatives. We look forward to working with the congressman to strengthen our nation’s research infrastructure for the millions of patients awaiting new therapies and cures.

A Weekly Advocacy Message from Mary Woolley: Social media for medical and health research

Dear Research Advocate:

If you haven’t already heard, “Throwback Thursday” is a weekly social media activity that celebrates unforgettable moments in our lives. Users of Facebook, Twitter or Instagram draw inspiration from old photos of family and friends or landmark events, and talk about them, accompanied by the hashtag #TBT. Wouldn’t it be great if today’s #TBT includes reflections on the impact of medical and health research on our lives and those of our loved ones — especially today, with the mid-term elections coming right up, with so much at stake for future generations?

Consider how far we’ve come in medicine. This week marks the 100th birthday of Dr. Jonas Salk, who gifted us with a polio vaccine. An article in The Guardian detailing Dr. Salk’s determination to eradicate this debilitating condition gives us plenty to reflect upon. Most people my age lived with the threat of polio and knew people with the disease.  Another “throwback” is the conversion of HIV/AIDS from a death threat to a manageable chronic disease. In the throes of public fears about Ebola, there are echoes of AIDS.  Continue reading →

Statement by Research!America President and CEO Mary Woolley on Nobel Prize in Physiology or Medicine

Research!America congratulates this year’s Nobel Prize winners in physiology or medicine, Professor John O’Keefe of the University College London, and May-Britt and Edvard Moser, both of the Norwegian University of Science and Technology. Their discoveries of cells that provide the basis for how the brain maps surrounding space, allowing us to navigate complex environments, may lead to a better understanding of diseases such as Alzheimer’s, which afflicts 44 million people worldwide. O’Keefe, who as a postdoctoral fellow was supported by funding from the National Institutes of Health, made the first discovery of the brain’s “inner GPS” in 1971. The Mosers continued to develop his research, discovering another key component of the brain’s mapping system which shed more light on our ability to navigate. Continue reading →

Promising Research Can’t Stall for Lack of Funding

Excerpt of a joint op-ed by Research!America President and CEO Mary Woolley and Susan G. Komen President and CEO Judith A. Salerno published in The Huffington Post.

MW & JSFebruary 23, 1954, was a milestone in the history of American medical research. That day, children at Arsenal Elementary School in Pittsburgh lined up to receive injections of a promising vaccine. Within months, schoolchildren all over the country were doing the same, and polio was on its way to being eradicated in the United States. The disease, which had killed and paralyzed children and adults alike, would no longer be a threat.

This remarkable achievement would not have been possible without the work of Dr. Jonas Salk and his team at the University of Pittsburgh, and — equally significant — grant support from the National Foundation for Infantile Paralysis, now known as March of Dimes. Policymakers played a role, too, when the Polio Vaccine Assistance Act of 1955 made possible federal grants to the states for purchase of the vaccine and for the costs of planning and conducting vaccination programs.

A generation or two later, millions of individuals worldwide benefited from another major medical breakthrough. Remember when being diagnosed as HIV-positive was an automatic death sentence in the 1980s? Accelerated research supported by the National Institutes of Health (NIH), in partnership with Burroughs Wellcome and Duke University, resulted in the development of AZT, the first drug that slowed the replication of HIV. By 1987, the drug won FDA approval and marked the first major treatment in extending the lives of HIV/AIDS patients. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Can we put a dent in the costly toll of suicide?

Dear Research Advocate: 
 
The loss of American Icon Robin Williams has riveted national attention on suicide, one of the 10 most common causes of death in the United States. Today, we are releasing our updated fact sheet on suicide that you can use when meeting with lawmakers and educating others about the impact research can have. Efforts to prevent suicide rightly draw on research findings. But progress has been painfully slow, stymied by serious gaps – partly due to severely limited funding – in the basic research base that precedes private sector development, and stymied by the equivalent of handcuffs placed on social science research.

The notion promulgated by some in the Congress that social sciences research doesn’t add enough value to merit federal funding is not just unfounded, it’s holding us back. Social sciences research saves lives. Case in point: behavioral research guided the development of a suicide intervention that was pilot tested in schools in Georgia and Connecticut and resulted in a 40% reduction in attempted suicides. It has since been implemented in schools across the country. This is just one example of social sciences research at work.

Research moves faster when patient advocates engage. This is the history of the nation’s commitment to defeating polio, to ramping up HIV/AIDS research, to prioritizing breast cancer research and women’s health research overall. Writing in the New Yorker last month, Seth Mnookin described the impact that “dedicated … well-informed families” can have in pushing progress. In his responsive letter to the editor, Peter L. Saltonstall, CEO of the National Organization for Rare Disorders, focused on the use of social media by patient groups to establish global registries, taking full advantage of abilities we didn’t have just a few years ago, and in so doing, saving lives. But there is another message here. The research community must work more closely with patient advocates in order to drive medical innovation. As one of the researchers in the Mnookin article said, “Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’” Continue reading →

How To Help Accelerate Medical Progress In America

Excerpt of an article published in the Imperial Valley News.

AYCEach year in the United States, nearly 16,000 kids are diagnosed with cancer. And on any given day, as many as 5 million Americans are living with Alzheimer’s disease. Beyond its debilitating symptoms, the death rate for Alzheimer’s is on the rise.

But there are steps you can take to protect your family from these potentially devastating medical conditions.

One idea that may come as a surprise to many Americans is to contact your congressional representatives and the candidates for their seats.

That’s the suggestion of a national, nonpartisan, voter education initiative called “Ask Your Candidates!” designed to empower voters to talk to candidates about the future of medical progress in the United States. Congress plays a key role in influencing the future of lifesaving research. Many voters are asking candidates if, once elected, they will vote to increase federal funding for medical research and support policies that spur innovation.

The initiative helps voters engage candidates on social media and through local events, grassroots, advertising and other interactive projects.

Read the full article here.

Member Spotlight: University of Southern California School of Social Work

By Marilyn Flynn, dean of USC School of Social Work

FlynnAs one of the nation’s first schools of social work, the USC School of Social Work is widely recognized as a top-tier graduate program that offers rigorous career preparation for academic, policy, and practice leaders and provides an innovative and supportive environment for research on critical social problems.

Researchers at the school are dedicated to exploring the social and behavioral determinants of physical and mental health issues, in addition to translating research findings into real-world strategies to improve the health and well-being of individuals and society. Because medical research is a critical component of this interdisciplinary pursuit, our scientists naturally embrace the mission of Research!America to improve awareness and build public support for research seeking to cure, treat, and prevent physical and mental disorders.

Our Hamovitch Center for Science in the Human Services was the first endowed center for interdisciplinary social work research at any university. A leader in the evidence-based decision-making and practice movement, the center continues to expand with the recruitment of nationally recognized faculty members and newly established research cores and institutes in aging; behavior, health, and society; child development and children’s services; homelessness, housing, and social environment; management, organizations, and policy transformation; military; and serious mental illness. Continue reading →

A Weekly Advocacy Message from Mary Woolley: No recess for advocates!

Dear Research Advocate:

As I write, most members of Congress are on the way home for August recess. As anticipated, no further action has been taken on the appropriations front – or much else, for that matter. In terms of issues we care about: no movement on tax reform, which means no much-needed enhancement of the research and development tax credit; no repeal of the medical device tax; and no final passage of Fiscal Year 2015 appropriations bills.  In upcoming letters I will talk in more detail about Capitol Hill-focused advocacy strategies through the election and beyond.

In the absence of legislative action, some attention – in a bipartisan manner – is being given to research for health. In previous letters, I’ve talked about an effort spearheaded by House Energy and Commerce Chairman Fred Upton (R-MI-06) and Ranking Member Diana Degette (D-CO-01) called the 21st Century Cures Initiative that will remain active over the recess. Public input is being sought as central to this initiative. The truly engaged and whip-smart congressional staff coordinating this initiative have indicated that they would welcome your thoughts at any time. They are particularly interested in the National Institutes of Health, the Food and Drug Administration and public-private partnerships. If you believe the key to faster medical progress is increased funding, tell them. If you feel that bottlenecks in the clinical trials process are the priority concern, tell them. This is not only an opportunity to seed positive change; it is an opportunity to elevate the priority of medical progress going forward. When you think about it, the volume of comments is nearly as important as their content. Issues with an army behind them get attention. To submit comments, e-mail cures@mail.house.gov. Continue reading →

Statement by Research!America President and CEO Mary Woolley on the Accelerate Biomedical Research Act

Research!America applauds Senator Tom Harkin for taking bold, decisive action to heal fissures in our nation’s research pipeline with legislation that will strengthen the National Institutes of Health (NIH) budget over the next six years. The Accelerate Biomedical Research Act will establish a pathway for sustained growth in the NIH budget. That budget has remained virtually stagnant over the last decade, jeopardizing promising research to combat disease and deflating the aspirations of early career scientists. NIH-funded research fuels the development of lifesaving therapies and treatments, and creates opportunities for public-private partnerships to better understand Alzheimer’s, cancer, heart disease and other major health threats here and abroad.

Senator Harkin and other congressional leaders recognize the potential of innovative research, but it is Senator Harkin who is taking the lead at a time when too many elected officials appear to have taken their eyes off the ball with our global leadership in science and technology at risk. China and other countries are aggressively increasing their research and development investments, luring scientists to their shores and challenging our dominance in medical research and innovation. According to polling commissioned by Research!America, a majority of Americans are skeptical that the U.S. will maintain its pre-eminence in science by the year 2020, and many policy experts agree. We urge Congress to support the Accelerate Biomedical Research Act to improve the health of Americans and ensure our global competitiveness.

Medical Research: It’s about you and me

collage fact sheetResearch!America’s newest fact sheet series highlights the personal stories of medical research and the importance of increasing the NIH budget in FY15. We hope you will share these fact sheets with your representatives or congressional candidates, or take it with you on Hill or in-district visits. No one who reads these stories can doubt the significance of medical progress. A stronger investment in research is needed now more than ever!

Here are their stories:

What new discoveries are we delaying and missing when we slow the pace of medical and health research?

We’ve made progress. But the funding to sustain it is eroding.