Newsletter

The Research Advocate, our award-winning membership newsletter, provides the latest news and information on medical, health and scientific research advocacy, as well as reports from Research!America and member organizations. Regular features include policy articles, profiles of Research!America members, media coverage of research advocacy issues, a column by Research!America President and CEO Mary Woolley, and important updates to help our members in their own efforts to make research to improve health a higher national priority.

From Research!America

Advocacy Awardees Share their Motivation for Advancing Research

“This is an extraordinary time for advocacy in research - because it is an extraordinary time for science,” said Mary Woolley, president and CEO of Research!America, at the 19th annual Research!America Advocacy Awards, held March 11 at the Andrew W. Mellon Auditorium in Washington, D.C. The 2015 Advocacy Awards honored exemplary leaders in medical and health research advocacy who have advanced our nation's commitment to research, including Reps. Fred Upton (R-Mich.) and Diana DeGette (D-Colo.); ABC's "Good Morning America" anchor Robin Roberts; Michael Milken, founder of the Milken Institute and FasterCures; Kenneth Olden Ph.D., director, National Center for Environmental Assessment, U.S. EPA; David Van Andel, chairman and CEO, and George Vande Woude, Ph.D., founding scientific director, Van Andel Research Institute; and the Society for Neuroscience (SfN). In their acceptance speeches, the recipients shared their personal motivations for advancing medical research.

Reps. Upton and DeGette were presented with the 2015 Edwin C. Whitehead Award for Medical Research Advocacy for their commitment to furthering the discovery, development and delivery of lifesaving medical advances. “Our leadership support for medical progress has been long, extending from the doubling of the NIH budget … to the 21st Century Cures initiative today,” said Rep. Upton, while Rep. DeGette stated, “I’m honored to be the recipient of an award with this distinguished legacy.”

Robin Roberts, who accepted the Isadore Rosenfeld Award for Impact on Public Opinion, publicly shared her battle with not one, but two devastating diseases: breast cancer and MDS or myelodysplastic syndrome. “For 174 days, because of my illness, I was unable to say ‘Good morning, America’ and yes I was counting.”

Michael Milken, a cancer survivor who lost his father and other family members to the disease, was presented with the Gordon and Llura Gund Leadership award. He said, “Had I been diagnosed with cancer in the 1970s instead of 1993, I might not be with you tonight. Most of all, I want to thank you for your commitment which allows me to stand here today.”

Kenneth Olden, Ph.D., recipient of the Raymond and Beverly Sackler Award for Sustained National Leadership, shared the impact that his childhood in an impoverished community in Tennessee had on his future career path. “The problems in our community were not being addressed,” he said. “As a teenager I concluded that ‘one of us’ had to ‘break out.’”

David Van Andel and George Vande Woude, Ph.D., were presented with the Geoffrey Beene Builders of Science Award. Van Andel emphasized the importance of teamwork, saying, “We can change the world, but we have to work together,” he told attendees. “I urge you to acknowledge the nuance and necessity of everyone’s role in what makes us successful,” while Dr. Vande Woude shared the struggle of his wife’s battle with cancer, but added that there was hope in new therapies.  “Don’t give up America,” he said. “We are close to the finish line.”

Steven E. Hyman, M.D., president of SfN, accepted the Paul G. Rogers Distinguished Organization Advocacy Award on behalf of SfN.  “As a society, we are absolutely dedicated to making sure that we can find the funds both to make new discoveries and to translate them,” said Hyman.

To learn more about the event and this year’s recipients, or to nominate someone for the 2016 Advocacy Awards, visit www.researchamerica.org/advocacy_awards.

Click here for a special insert of the 2015 Advocacy Awards dinner and honorees.

Annual Meeting of Members Looks to Future of Research Advocacy

Prior to the 2015 Advocacy Awards, Research!America held its 26th Annual Meeting of Members at the Ronald Reagan Building and International Trade Center in Washington, D.C. Research!America members joined the Board of Directors for the latest news and information impacting the research advocacy community. Among those providing updates were two guest speakers, Alex Silver, co-founder, executive chairman and executive board member of the EB Research Partnership, and Representative Chris Van Hollen (D-Md.).

Silver’s son’s diagnosis with Epidermolysis Bullosa (EB), a painful condition that causes blisters both inside and outside the body, led to Silver’s role in research advocacy. He shared the value of disease-specific nonprofits adopting a “venture philanthropy” model, investing profits from commercial investments back into research. “You can fund the world’s best minds, and they can conduct the world’s best and most promising research but if their ideas can’t make it to patients, you are wasting the most precious resource of all, time,” he said.

Rep. Van Hollen shared his plans to support an FY16 budget that is similar to the President’s Budget, in that it calls for $37 billion more for non-defense discretionary spending over the sequester cap and $38 billion for defense. “We need to make sure [federal research] agencies have the resources to move research forward,” he said.

Sequestration Still Impacting Budget

Both the House and Senate have released their budget resolutions for FY16. These plans reflect the majority party’s spending priorities and outline their 10-year spending plans. Neither version calls for an end to sequestration and both call for deep cuts in non-defense discretionary (NDD) spending after FY16 – more than required under the 2011 Budget Control Act. While appropriators would have flexibility to be selective in which agencies and programs would be cut to accommodate the overall spending reductions, in reality the very size of the required budget cuts would leave policymakers virtually no flexibility to spare any national priority in the non-defense arena. It is important to note, however, that these resolutions are not binding in future years; appropriators in each House will use the top-line budget numbers for FY16 to determine funding allocations for each appropriations subcommittee, but beyond that, these resolutions are largely symbolic. The bottom line is that we face an FY16 budget that is largely flat due to sequestration. To secure increases for the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), the U.S. Food and Drug Administration (FDA), the National Science Foundation (NSF) and the Agency for Healthcare Research and Quality (AHRQ), we must convince members from both sides of the aisle to assign these agencies a high priority in the appropriations process. One way to make the case for these agencies is to submit written testimony in conjunction with appropriations subcommittee hearings. If you are interested in submitting testimony and Research!America can be helpful in any way, please contact us at edehoney@researchamerica.org

The House “Dear Colleague” letter inviting members of Congress to sign on in support of robust FY16 funding for NIH was penned by Reps. David McKinley (R-W.Va.), Susan Davis (D-Calif.), André Carson (D-Ind.) and Peter King (R-N.Y.). A similar letter was written by Sens. Bob Casey (D-Pa.) and Richard Burr (R-N.C.), addressed to their colleagues in the Senate. 

Action Alert

Ask Members of Congress to be Champions of Medical and Health Care Research

Thank your members of Congress for their role in elevating the priority of medical and health care research. Be sure to ask them to sustain this focus on the need for medical progress. There are many ways policymakers can show support - through involvement with the 21st Century Cures initiative or its counterpart in the Senate, by working to repeal the medical device tax, by advocating for the appropriation of meaningful budget increases for federally funded research and more. Ask them to step up and be a champion today! 

Visit http://bit.ly/1DscgzT to learn more.

Regular Features

President's Letter

March delivered a torrent of speech-making about the value of research for health. Members of Congress from both sides of the aisle made impassioned public statements in many venues about how investing (some said investing "a lot"; one said "double") in research, explaining that it is worth the cost, even if we as a nation have to borrow the money to make it happen. Like members of Congress, none of us have to look farther than our own family and friends to find reasons to step up the pace of medical progress. Nor do we have to look hard to see the evidence that the U.S. is not the "healthiest nation" - the truth is, it hasn't been for awhile now. Our surveys show that more and more Americans know that; more and more Americans also say that this country will no longer be the global leader in science and technology just five years from now. Studies by Battelle and others confirm what the public sees, showing our downward trajectory in health and world leadership, even as other nations ramp up. 

Given all of this, it's hard to believe that March ended with both houses of Congress releasing budgets that do not even give lip service to investing in a healthier nation or to powering up research and innovation. While the budgets are not binding, they provide a vehicle to state priorities; they failed utterly to give a high priority to the future of health and to the value of innovation. We think it's time to ask for accountability from our elected officials. You can reach out to your elected officials while they are at home on recess. If you pass up the moment, the assumption elected officials will rightly have is that those budget bills are OK with you. 

Special Thanks to our Principal Partners and to Renewing Research!America Alliance Members

RESEARCH!AMERICA EXTENDS SPECIAL THANKS TO OUR PRINCIPAL PARTNERS

2015 ADVOCACY AWARDS

Benefactors:

Geoffrey Beene Foundation

Hogan Lovells US LLP

Whitehead Institute for Biomedical Research

Dinner Host:

Merck & Co., Inc.

Grand Reception Host:

Prostate Cancer Foundation

Program Partners:

Amway

Elsevier

The George Washington University

Milken Family Foundation

Contributor:

Novartis International

Sponsors:

Celgene Corporation

The Johns Hopkins University

Stanley Center for Psychiatric 

Research at The Broad Institute

US Against Alzheimer’s

Friend:

American Cancer Society

Visit www.researchamerica.org/partnership_opportunities for ways to support Research!America.

SPECIAL THANKS TO Renewing Research!America Alliance Members

Renewing Members

AdvaMed 

Akron Children’s Hospital

Albert Einstein College of Medicine of Yeshiva University 

Alliance for Academic Internal Medicine 

American Public Health Association 

The American Society for Microbiology

The American Society of Hematology 

AstraZeneca US 

Biotechnology Industry Organization 

Celgene Corporation 

Hydrocephalus Association 

Lupus Foundation of America, Inc. 

March of Dimes Foundation 

Oregon Health & Science University 

The Salk Institute for Biological Studies 

The Smith-Kettlewell Eye Research Institute 

Stanley Manne Children’s Research Institute 

Society for Women’s Health Research 

University of Southern California School of Social Work 

Vietnam Veterans of America 

Wright State University 

Yale University School of Nursing 

Not yet a member? Join Research!America today at www.researchamerica.org/supportourwork.

Member Spotlight: EB Research Partnership

Founded: 2010

Location: New York, N.Y.

Mission: Treat and cure Epidermolysis Bullosa (EB) as quickly and efficiently as possible.

EB Research Partnership (EBRP) grew out of a collaboration between the Jackson Gabriel Silver Foundation (JGSF) and Heal EB. These organizations were started by two families on separate coasts that shared a singular goal - to find a cure for their sons, Jackson Silver and Michael Fullmer, respectively, and all other children and adults that suffer from EB. With the community’s support, EBRP has been aggressively and efficiently funding research since 2010. To date, EBRP has raised over $4 million for research grants and has been instrumental in securing an additional $35 million for critical EB research. EBRP has given grants to support the cutting-edge work at institutions such as the University of Minnesota, Stanford University, and the University of Southern California. EBRP also supports research infrastructure to ensure that treatments will get to those in need as swiftly as possible.

The mission of the EB Research Partnership (EBRP) is to  fund research aimed at treating and curing EB. Individuals with EB, a rare disease affecting only 30,000 people in the U.S., lack a critical protein that binds the layers of skin together, causing the skin to tear apart, blister and sheer off from the slightest touch. This leads to severe pain, disfigurement and wounds that never heal. Blisters form all over the body, inside and out. 

“Research is necessary to make life-changing treatments and cures a reality for those living with EB,” said Alex Silver, co-founder, executive chairman, and executive board member of EBRP. 

One of the greatest challenges that EBRP faces is funding EB research at a rate that will benefit this generation of those living with EB. Partnering with both for-profit and nonprofit organizations, EBRP employs a venture philanthropy model to achieve its goals. In this model, if research funded by EBRP has commercial success, the foundation shares in the profits,  reinvesting in further research.

Research!America is a fantastic resource to rare disease nonprofits,” said Silver. “First, the ability to meet and communicate with other rare disease organizations is valuable.  Second, knowing that there is an advocacy organization out there that works tirelessly to advance the common needs of rare disease organizations helps make our mission easier. “

According to Silver, EBRP has three main goals toward achieving a cure for EB. The first is to ensure the continued flow of funding into rare disease research. The second is to modernize the approval and regulatory process for rare disease.

“Risk is relative,” said Silver. “Living life with a life-threatening rare disease is not the same as having a common cold. The time to approval and level of risk associated with drug and treatment approval should commensurate with the risk of having a rare condition.”

The third goal is to improve the nonprofit business model by using tools like venture philanthropy. Doing so will lead to greater sustainability and success.

“Curing EB will take a lot of hard work and a little bit of good fortune,” continued Silver. “We want to make sure that we are in the strongest position possible to take advantage of opportunities when they arise. I can’t stress enough the need to have good partners,  innovative thinking and a collaborative approach. We don’t have the luxury of time to reinvent the drug approval process. However, we can be as efficient as possible - we owe that to those suffering from EB.” 

To learn more, visit http://ebresearch.org.

From Washington

Fact Sheet Series Highlights NIH Funding in Each State

The amount and impact of National Institutes of Health (NIH) funding on a state-by-state basis is the focus of a series of fact sheets released by the Federation of American Societies for Experimental Biology (FASEB). The fact sheets also highlight data regarding NIH support for clinical trials, training grants, technology transfer, as well as bioscience businesses, jobs and wages. “We hope that scientists and other citizens concerned about scientific progress will use this information, sharing it with their elected representatives and their communities,” said Joseph R. Haywood, Ph.D., president, FASEB, in a press release. “Many elected officials do not realize the impact of NIH funding and how it comes back to communities throughout the country.”  To view the fact sheet series, visit http://bit.ly/1unMvv9.

White House Marshals Resources to Fight Antibiotic-Resistant Bacteria

Drug resistant bacteria cause approximately two million illnesses and 23,000 deaths each year in the United States alone, according to the Centers for Disease Control and Prevention (CDC). To address this urgent health threat, the White House recently announced a National Action Plan for Combatting Antibiotic-Resistant Bacteria that includes a broad, multi-faceted government approach over the next five years to save lives and prevent illness. 

Slowing the emergence of resistant bacteria will require a number of changes in the use of antibiotics in health care and agriculture settings. The plan also calls for improvements with surveillance and integration of data from multiple networks, development of rapid and innovative diagnostic tests, the acceleration of basic and applied research to understand the ecology of antibiotic resistance, the development of new antibiotics, and improved collaboration with international partners to track and analyze antibiotic resistance. 

“Effective antibiotics are vital to our national security,” said President Obama in an interview with WebMD. “They save the lives of service members wounded in battle. They prevent infections in one community from spreading far and wide. They’re also a critical defense against bio-terrorism. They are, quite simply, essential to the health of our people and people everywhere.” Research!America updated a fact sheet on infectious diseases that includes national and state-based data, and the testimonial of a former patient who suffered from multiple drug-resistant strains of bacteria. 

To view the action plan, visit http://1.usa.gov/1yiurjQ and for the fact sheet, visit http://bit.ly/1CsGr6o.

Innovative Approach to Funding Translational Alzheimer’s Research

Four Research!America members, Johnson & Johnson, Lilly, GlaxoSmithKline and Pfizer, Inc., are among five companies providing the initial financing for the new Dementia Discovery Fund, a world-wide endeavor to accelerate Alzheimer’s research. The fund, which is also supported by the British government, a top Alzheimer’s research charity (Alzheimer’s Research UK), and Biogen Idec Inc., was announced by Jeremy Hunt, UK health secretary, at the World Health Organization’s first conference on dementia in Geneva, Switzerland. 

The $100 million fund will function like a venture capital fund, identifying promising research and providing the necessary support to prepare for and begin patient testing, or translational research. At least 10 grants will be awarded each year, and will target smaller biotech companies that do not have the necessary funds for patient studies. The unique nature of the fund lies in the fact that much of the support for these grants will come from major drugmakers that would normally be viewed as rivals for those companies receiving the grants.

“The venture capital fund will choose projects based on the most promising science, the fastest time to patients and the fastest time to results,” said Paul Stoffels, M.D., chief scientific officer and global head of pharmaceuticals, Johnson & Johnson, in an Associated Press article.

Dementia currently impacts 47 million people worldwide, a number that is expected to double by 2030 and triple by 2050. The economic impact of dementia on the global economy each year is over $604 billion and rising.

One Degree from Cancer

One in two men and one in three women will be struck with cancer in their lifetimes. These statistics are at the heart of the new One Degree campaign, launched by the American Cancer Society Cancer Action Network (ACS CAN) and Stand Up to Cancer (SU2C), which recognizes that we are all just “one degree” away from a family member or friend who has battled the disease. The campaign is bringing together cancer advocates as well as celebrity figures to ask Congress to increase funding at the National Institutes of Health (NIH) by $6 billion over the next two years, to include $1 billion for the National Cancer Institute (NCI) for cancer research.

Research!America President and CEO Mary Woolley attended an event in late March to kick off the campaign on Capitol Hill, during which actor Pierce Brosnan, actress Marcia Cross and Kareem Abdul-Jabbar, NBA Hall of Fame member, shared stories of their families’ and in some cases their own battle with cancer, as well as the people they have lost to the disease. 

For more information, visit www.OneDegreeProject.org, and to share your own “one degree” story, 
use #OneDegree.

Public and Policymaker Engagement Critical to Moving Research Initiatives Ahead on Capitol Hill

In recent presentations at meetings and conferences hosted by member organizations, Research!America president and CEO Mary Woolley stressed the importance of scientists engaging with the public and policymakers as momentum builds to advance proposals on Capitol Hill to speed medical progress by investing in research and innovation. In a speech at the American Congress of Obstetricians and Gynecologists’ Congressional Leadership Conference on March 9 in Washington, D.C., Woolley discussed priorities of the 21st Century Cures legislative draft such as integrating the patient’s perspective in drug development and modernizing clinical trials, and highlighted pressing issues missing from the draft including adequate funding for federal health agencies and provisions to address gaps in safety and efficacy testing, including for subgroups. 

During a visit to Louisiana State University (LSU) on March 23-24, Woolley met with faculty, students, LSU President F. King Alexander and Senator Bill Cassidy (R-La.) to recognize the university’s achievements in medical research and mark LSU’s new membership with Research!America. “By joining Research!America we have become members of a global community that consistently and successfully advocates to increase support for federal funding agencies, many of which support research efforts at LSU,” said LSU College of Science Dean Cynthia Peterson in a press release. 

At the University of Michigan, Woolley participated in a program titled “Challenges and Opportunities in Science Policy Making” on March 30 with other speakers including Director of the White House Office of Science and Technology Policy John Holdren, Ph.D., and  American Association for the Advancement of Science CEO and former Congressman Rush Holt. She noted that scientists remain largely invisible to the American public, citing polling commissioned by Research!America which revealed that 70 percent of those surveyed are unable to name a living scientist. The way to change public perception, she said, is for scientists to engage with the public and talk about aspirations for research, the health and economic impact of research and their personal commitment to research.

NIMH Director: Suicide Rates Unacceptable

Tom Insel, M.D., director, National Institute of Mental Health (NIMH), says society has not taken the problem of suicide as seriously as traffic fatalities, noting changes in speed limits and use of seat belts. The suicide rate is trending upward while rates for other fatal medical problems like cancer and heart disease are on the decline, Insel said in a recent interview on WBUR-FM in Boston. More than 41,000 Americans died from suicide in 2013.

“There are some things we don’t know, which we need to understand better,” Insel said. “Many people make attempts. Far fewer of those people die from suicide. And understanding who’s at the greatest risk for mortality would be a critical piece of this. That does require the kind of research that takes us into biological risks and other kinds of risks, as well. “

Insel also addressed the progress of medications and psychotherapies that show promise in reducing suicide but stressed there is still more research to be done in this area. NIMH has released a new Strategic Plan for Research to balance the need for long-term investments in basic research with mental health needs. The objectives range from defining the mechanisms of complex behaviors to strengthening the public health impact on NIMH-funded research. To view the plan, visit http://1.usa.gov/1xkBqxw

“I think one of the most hopeful signs, though, from the last two to three years, is that for the first time, scientists are beginning to see suicide as the target itself,” Insel noted in the interview. “They’re not thinking of this as an adverse event or a side effect, or something that is tacked onto a study of depression or PTSD or drug addiction. They’re thinking about the potential of interventions that would be specifically anti-suicidal.” 
To listen to the complete interview, visit http://bit.ly/1G5KubF.

New Battelle Report Examines Patent Output of NIH-Funded Research

A study by Battelle’s Technology Partnership Practice found that research funded by the National Institutes of Health (NIH) generated one patent for every $16.9 million invested between 2000-2013. Some NIH institutes produced more patents in that same period. For example, the National Institute of Biomedical Imaging and Bioengineering produces a patent for every $4 million invested. The study also found that the National Science Foundation (NSF), the National Institute of Standards and Technology (NIST) and the Department of Energy (DOE) have a much higher rate of patent output per dollar than their peer agencies.

The study, Patents as Proxies Revisited: NIH Innovation 2000-2013, used data from the NIH RePORTER database and Thomson Reuter’s Thomson Innovation Patent research system, as well as the U.S. Patent and Trademark Office (USPTO) and the American Association for the Advancement of Science (AAAS). The study looks to patent output and citation rate as a proxy for the impact of research, but did offer several caveats, including that the work of NIH is not specifically focused on patent production or other commercial benefits, as much of the research supported by NIH creates the foundation for future discoveries.

To view the full report, visit http://bit.ly/19ffMAu.

Partnering to Prevent Diabetes

In an effort to curb the growing number of Americans with type 2 diabetes and the increasing strain this places on the health care system, the Centers for Disease Control and Prevention (CDC) and the American Medical Association (AMA) have joined together on a new initiative, “Prevent Diabetes STAT.”

The goal of this initiative is to identify those individuals at risk with prediabetes, and help them lose weight in order to prevent the disease from fully developing. Of the more than 86 million Americans with prediabetes, almost 90 percent of them are unaware of their condition.

Included in the initiative are tools to help both health care providers and patients identify the warning signs of diabetes. For more details, visit http://bit.ly/1afgG0i.

In the News

Media Matters

FY16 Budget Outlook

Mary Woolley, president and CEO, Research!America, penned a letter to the editor that was published in The New York Times about the FY16 budget negotiations. "Policymakers from both sides of the aisle have asserted the importance of fighting disease and disability. But acknowledging a priority is not the same as honoring it,” wrote Woolley. 

Research!America issued a statement following the release of the House and Senate FY16 budget proposals which was quoted in POLITICO Pro and The Cancer Letter. “The House and Senate FY16 budget proposals call into question our nation’s commitment to medical innovation. Are we willing to delay the discovery, development and delivery of lifesaving therapies and cures because of insufficient funding, or will we choose to accelerate the pace of medical progress?” 

In an article in Chemical and Engineering News about proposed cuts to discretionary spending in  FY16 budget proposals that will impact federal science funding, Ellie Dehoney, vice president of policy and advocacy at Research!America, said, “It just shows that we have not really achieved a change in the [national] conversation yet.”

Investments in Innovation

In an op-ed authored by Norman Augustine, former chairman and CEO of Lockheed Martin and National Academy of Sciences member, in Innovation Magazine, he discussed the long-term impact of investments in research and science. “Years ago scientists working in white coats in the back of a research laboratory pursuing solid state physics and quantum mechanics probably had no idea that their efforts would make possible the creation of iPhones, iPads and iPods and generate jobs for thousands of factory workers, advertisers, salespersons and truck drivers,” Augustine wrote. 

Medical Device Tax Repeal

Gregory Sorensen, M.D., CEO, Siemens Healthcare North America and Research!America executive board member, and Mary Woolley co-wrote an op-ed in Roll Call calling for the repeal of the medical device tax to spur innovation, help patients and the economy. “If increased investment in medical innovation is a national priority, as we strongly believe it is, imposing an excise tax on one of the most prolific medical technology industries is counter-strategic,” they wrote. The op-ed was also published on Triblive.com.

Mary Lasker’s Legacy 

Claire Pomeroy, M.D., president of the Albert and Mary Lasker Foundation, wrote an op-ed in The Hill highlighting the pioneering medical research advocacy efforts of Mary Lasker, business leader and philanthropist. “At a time when women were still largely relegated to the margins of medicine, business and philanthropy, Lasker had access to the halls of power and a remarkable ability to mobilize public support for funding medical research,” Pomeroy wrote.

2015 Advocacy Award Winners

David Van Andel, chairman and chief executive officer of the Van Andel Institute and George Vande Woude, Ph.D., founding scientific director of the Institute, were highlighted as 2015 Research!America Advocacy Award recipients in an article in Mlive.com

Research!America Poll in the News

Research!America’s public opinion poll about eye and vision health was included in an article in Medical News Today about treatments and therapies for retinal degeneration disorders. 

Media Contacts

Suzanne Ffolkes
VP Communications
571-482-2710

Anna Briseño
Senior Communications Specialist
571-482-2737

America’s economic destiny lies in innovation, technology, science and research.
The Honorable John E. Porter