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. For questions or comments contact Jennifer Santisi,

From Research!America

A Paradigm Shift from Treatment to Prevention: BIO Convention Session with Research!America Board Members

Bill Hait, M.D.Research!America board members Bill Hait, M.D., Janssen Research & Development, and Keith Yamamoto, Ph.D., University of California, San Francisco, will be discussing the concept of immorbidity—a perspective on medicine where priorities shift from treating or curing diseases like cancer and Alzheimer’s to preventing and delaying disease, at the BIO International Convention on Wednesday, June 8.

The session, Lifespan or Healthspan: Is it Time for a Paradigm Shift in the Life Sciences? An Interview with Bill Hait, Global Head, Janssen Research & Keith Yamamoto, Ph.D.Development, LLC, facilitated by Research!America, will take place during the convention, June 6-9 in San Francisco, CA. The session will be the opening event to the precision medicine track, one of the 18 session tracks offered during the convention.

The conversation between Dr. Hait and Dr. Yamamoto will focus on the science and policy rationale behind the concept of immorbidity, its roots in personalized medicine, its particular relevance to oncology and the case for a major shift in investment and effort within the life sciences enterprise away from post-symptom to pre-symptom care.

The BIO International Convention attracts over 15,000 biotechnology and industry leaders who come together for one week of intensive networking to discover new opportunities and promising partnerships. This event covers a variety of research areas, including drug discovery, biomanufacturing, genomics, biofuels, nanotechnology and cell therapy. In addition to the wide variety of sessions, the convention will also have an Exhibition Hall, where many of Research!America’s alliance members will be exhibiting. For more information visit

Medical Research: An Economic Stimulus for Ohio and the Nation

NEOMED Education and Wellness CenterThe buckeye state, often associated with prestigious universities and national sports teams, is also home to a thriving biomedical research ecosystem. Highlighting Ohio as a model for the nation is the focus of a June 6 forum “Medical Research: The Right Prescription for Economic Growth” on the campus of Northeast Ohio Medical University (NEOMED) in Rootstown, Ohio.

The forum’s panel discussion will be moderated by Research!America board member Susan Dentzer, president and CEO of The Network for Excellence in Health Innovation. Panelists include: Walter Koroshetz, M.D., director, National Institute of Neurological Disorders and Stroke (NINDS); Michael Drake, M.D., president, Ohio State University; Research!America board member Lucinda Maine, Ph.D., R.Ph., EVP and CEO, American Association of Colleges of Pharmacy (AACP); Thomas F. Zenty III, CEO, University Hospitals; Joe Kanfer, chairman and CEO, GOJO Industries; and Research!America board member Sudip Parikh, Ph.D., vice president and general manager of health and analytics, Battelle. Research!America board member Jay Gershen, D.D.S., Ph.D., president of NEOMED and nearly a dozen Ohio university presidents will provide remarks, along with Andrew Doehrel, president and CEO, Ohio Chamber of Commerce. Research!America president and CEO Mary Woolley will release new survey results related to Ohioans’ views about research and innovation.

Nearly 60 percent of Ohioans report having at least one chronic disease or clinical risk factor for arthritis, asthma, cancer, chronic kidney disease, COPD, diabetes, heart disease, high cholesterol, high blood pressure and stroke. “Ohio has the uniqueness of being a health care epicenter that is also trending higher in disease and chronic conditions, but that trend is reversible,” said Walter E. Horton Jr., Ph.D., vice president for research, dean, College of Graduate Studies, professor, anatomy & neurobiology at NEOMED, in a recent Ohio Matters op-ed. Medical research is a “team sport,” he added, noting that partnerships between industry and academia are addressing health challenges and supporting economic growth.

For more information about the program, visit

Federal Policy Update

The Senate HELP Committee’s “Innovations Initiative” – a companion process to the House 21st Century Cures Act (H.R. 6) – finished its final round of markups, resulting in a total of 19 bipartisan bills aimed at accelerating the discovery, development and delivery pipeline. Committee leadership are in continued negotiations to finalize an Innovations legislative package with supplemental funding for the National Institutes of Health (NIH). While bipartisan agreement on supplemental funding for the Food and Drug Administration (FDA) is less certain, Research!America and other research advocates continue to make the case that such funding is essential to the success of the initiative.   

The House and Senate Appropriations Committees parsed the overall FY17 discretionary budget into “302(b)” allocations or top-line spending for its various subcommittees. Since no congressional budget resolution has been adopted this year, allocations are based on the $1.07 trillion discretionary spending caps agreed to in the bipartisan Budget Act passed in 2015 and remain virtually flat compared to FY16 levels.

The Senate Commerce, Justice, Science Subcommittee recently advanced its appropriations bill, which funds the National Science Foundation (NSF) at $7.5 billion in FY17, a little over a 1% increase from FY16. Research!America believes it is in our nation’s strategic interests to invest more robustly in the crucial scientific exploration NSF supports and is calling for a budget of $8 billion in FY17.

On the House side, the Agriculture, Rural Development, FDA Subcommittee marked up its FY17 appropriations bill, which includes a $33 million increase for FDA.  While modestly better than the President’s budget, the FDA cannot fulfill its massive list of responsibilities with nominal budget increases.

Earlier this month the Centers for Disease Control and Prevention (CDC) concluded that a causal relationship exists between the Zika virus and microcephaly. As mosquito season approaches in the continental U.S., the White House has shifted $589 million in budget funds to address the spread of Zika, and Congress has passed a law providing incentives for the private sector development of vaccines and treatments. While these are steps in the right direction, negotiations are still ongoing concerning the full $1.9 billion supplemental funding requested by the President.

The House is crafting bipartisan legislation to address drug abuse and addiction. More than a dozen bipartisan bills have been approved and will be packaged and considered on the floor in early May. The Senate passed a broad drug addiction treatment and prevention bill in March. 

Fetal tissue research is the focus of investigative and legislation action at both the state and federal levels. A special House committee tasked with investigating this research recently issued eight subpoenas and has been informally soliciting information from research institutions. Research!America has issued a fact sheet on the beneficial role fetal tissue research plays in advancing medical progress and signed on to the Association of American Medical Colleges statement highlighting the importance of this research.

HHS Secretary Sylvia Burwell has appointed Andrew Bindman, M.D., to serve as the Director of AHRQ. Dr. Bindman will begin his appointment on May 2, 2016 and is currently a professor of medicine, health policy, epidemiology and biostatistics at the University of California, San Francisco and director of the University of California Medicaid Research Institute.

Action Alert

Ask the Senate to Speed Medical Progress

We’re asking you to take action. Your senators have the opportunity to fight for cures--- cures for cancer, Alzheimer’s, lupus, multiple sclerosis and many more. The list of diseases is long, the need is urgent and the clock is ticking.

The Senate is currently working on a bill aimed at accelerating the discovery, development and delivery of new medical advances. The “Innovations” bill would put more muscle behind research—more money and better policies. If this bill passes, the potential for finding cures grows. If not, we are left with the status quo—it’s as simple as that.

Ask your senators to fight for Innovations and fight for cures that will save lives. To contact your senators, visit


Scientists Urge Candidates to Discuss Medical Progress

As the field of presidential candidates narrows and congressional races heat up, issues relevant to the health and well-being of voters will likely move to the forefront. Scientists committed to finding solutions to diseases and disabling conditions are speaking up and urging all candidates to share their views on medical progress. Do they support increased federal funding for research and policies to advance private sector innovation? 

As part of the national voter education initiative Campaign for Cures, scientists from Research!America member organizations recorded videos describing their research and the ways in which it could improve health and the economy. University of Nebraska Medical Center’s Howard Fox, M.D., Ph.D., Institute for Systems Biology’s Leroy Hood M.D., Ph.D., and Northeast Ohio Medical University’s Jason Richardson, Ph.D., are among those who urged candidates to make research a higher national priority in video messages.

“Funding for biomedical research has been a crucial part, not only in our ability to treat diseases but in our national economy with new companies, jobs and new ways to treat or analyze diseases for the betterment of Americans,” said Dr. Fox. Watch how these scientists deepen their understanding of disease and overcome obstacles to improve quality of life, visit

Celiac Awareness Month

Take #60forCeliac this May for Celiac Awareness Month. Celiac disease, a serious genetic autoimmune disorder, affects 1 in 133 people-- but getting diagnosed and staying healthy is no piece of cake. Eighty-three percent of those with celiac disease are misdiagnosed or undiagnosed. Those who have been diagnosed struggle to stay healthy. We need better. We need a cure. Experts agree that with community engagement and participation, we can make it happen in under 10 years.

Take #60forCeliac encourages individuals to watch and share a Beyond Celiac one-minute video that highlights what it’s like to live with celiac disease and to self-manage a serious genetic autoimmune disease that impacts lives more than may be apparent. Visit the Celiac Awareness Month page at, to watch the video and download infographics and additional resources. During May, donations of $30 will become $60forCeliac. Through the generosity of the Beyond Celiac board of directors, gifts from new donors will be matched 2-to-1, and existing donors’ gifts will be matched 1-to-1. 

Formerly known as the National Foundation for Celiac Awareness, Beyond Celiac advances widespread understanding of celiac disease as a serious genetic autoimmune condition. The organization promotes earlier diagnosis, provides evidence-based resources to help the community get and stay healthy. They are a key connector between the celiac disease community and leading clinicians, researchers and government agencies to propel research for additional treatment options. Beyond Celiac strives to inspire hope, accelerate innovation and forge pathways to a cure. 

Advancing the Science of Patient Input

Integrating patient perspectives in research and development has become increasingly important to ensure medical treatments and services align with patient needs. FasterCures executive director Margaret Anderson and managing director Kimberly McCleary examined a number of programs and initiatives that are incorporating the patient voice in biomedical R&D and health care delivery in the article “On the path to a science of patient input,” published in Science Translational Medicine, a journal of the American Association for the Advancement of Science (AAAS).

The overall goal, the authors said, is to develop best practices for an effective patient-centered framework to assess the value of care. FasterCures reviewed more than 70 collaborative initiatives that are shaping patient-centered practices and policies. 

Recommendations include training academic researchers, measuring the extent of patient engagement in research, integrating physicians and health professionals into the dialogue, increasing visibility of current research and tools, and building evidence to show which methods are working best. This is not a one-size-fits-all effort, the authors noted, and best practices must consider the needs of individual patient communities. To view the full article, click here

Collaborations in Cancer Research

Stand Up To Cancer (SU2C), an initiative of the Entertainment Industry Foundation (EIF), has launched a new program, Catalyst, that will leverage support and materials from the pharmaceutical, biotechnology, diagnostic and medical devices industries to accelerate research on cancer prevention, detection and treatment.

Catalyst brings together industry partners Merck, Bristol-Myers Squibb and Genentech for collaborative research studies using new pharmaceutical compounds under development or approved agents that can be investigated for other uses. Under a partnership with the American Association for Cancer Research (AACR), SU2C will issue a request for proposal (RFP) to the scientific community that will outline current treatments, available funding, and the estimated number of projects that will be supported.

"The new source of funding is very important and so is access to drugs and other materials. Cancer researchers face challenges in obtaining materials needed for clinical trials," said Phillip Sharp, Ph.D., chair of the SU2C Scientific Advisory Committee and institute professor at the Koch Institute for Integrated Cancer Research at the Massachusetts Institute of Technology (MIT), in a press release. This program, he said, will also provide opportunities to engage in cancer research more widely available to the research community.

Special Thanks to our Supporters and our Research!America Alliance Members


2016 Advocacy Awards


Susan Whitehead

Whitehead Institute for Biomedical Research

Program Partner:

Pfizer Inc


FasterCures, The Center for Accelerating Medical Solutions


American Association for Cancer Research

The University of Texas MD Anderson Cancer Center

Van Andel Research Institute

Allergy and Asthma Capitol Hill Briefing

Allergy & Asthma Network

Narratives for Medical Innovation Project

Biotechnology Innovation Organization

Ohio Research Forum

The Cleveland Clinic

Huntington National Bank

Special Thanks To Renewing Research!America Alliance Members

The ALS Association

American Chemical Society

Association for Women in Science

Celgene Corporation

ChemoCentryx, Inc.

Global Liver Institute

Harvard School of Dental Medicine

Indiana University School of Nursing

Keryx Biopharmaceuticals, Inc.

Kidney Cancer Association

Mayo Clinic

Milken Institute School of Public Health at the George Washington University

National Foundation for Infectious Diseases

Parkinson’s Action Network

South Alabama Medical Science Foundation

Spina Bifida Association

Stanford University School of Medicine

University of Alabama at Birmingham

University of California, San Diego School of Medicine/Health Sciences

University of Michigan

University of Michigan Health Science Schools

University of Southern California School of Social Work

Youngstown/Warren Regional Chamber

Not yet a member? Join Research!America today at

Regular Features

President's Letter

Mary Woolley, President and CEOA new level of anxiety for hospitalized patients and their families surfaced in recent days, as we learned that hospital-based medical errors are responsible for more than a quarter million deaths in the U.S. each year.  This is significantly more than the number of deaths from medical errors that startled us in 1999, estimated as high as 98,000, with the release of the Institute of Medicine’s landmark report, “To Err is Human.”  Since we’ve known about this problem for some time, what’s going on?  I’d say that we have failed, as a community of stakeholders in health, to put what we know to use, and to find out more about what we still don’t understand. I’m talking about the science of health care delivery, sometimes called “health services research.”  This work is typically funded by the federal government via AHRQ and NIH.  But it isn’t funded at the level of scientific opportunity nor clear public health need – not by a long shot. We need more success stories like AHRQ’s groundbreaking research that reduced central line-associated bloodstream infections in hospitals which not only saved lives but resulted in billions of dollars in cost savings.  One in five hospitals across the country now report zero central line infections.

AcademyHealth is the leading professional society that advocates for health services research.  All the stakeholders in research and innovation owe it to ourselves, our families, and the steady improvement of the health care system, to stand shoulder to shoulder with them in advocacy.  Join us, and them for the Capitol Hill briefing titled “From Discovery to Delivery: Research at Work Against Allergies and Asthma” on Friday, May 13, 12 – 1pm ET.  More details in this newsletter.

Member Spotlight: Brain & Behavior Research Foundation

Founded: 1987

Location: New York, NY

Mission: The Brain & Behavior Research Foundation is committed to alleviating the suffering caused by mental illness by awarding grants that will lead to advances and breakthroughs in scientific research.

Jeff Borenstein, M.D.The Brain & Behavior Research Foundation funds the most innovative ideas in neuroscience and psychiatry to better understand the causes and develop new ways to treat brain and behavior disorders. These disorders include depression, bipolar disorder, schizophrenia, autism, ADHD, anxiety, borderline personality disorder, obsessive-compulsive disorder and PTSD. Since 1987, the Foundation has awarded more than $346 million to fund more than 4,000 leading scientists around the world.

Since the war on cancer was declared almost 50 years ago, billions of dollars have poured into cancer research. Only a fraction of those dollars are spent on mental health research, though it is impossible to overstate its economic, social and personal toll on society.  One in four people live with mental illness. One in five youngsters has a mental illness and tragically suicide is the second leading cause of death for people between ages 15-24.  

“We have seen tremendous scientific advances, but we need to expand basic, translational and clinical research to better understand the workings of the brain and why things go wrong, and test new medical and psycho-social approaches,” said Jeff Borenstein, M.D., president & CEO of the Brain & Behavior Research Foundation. “It is time to declare war on mental illness, and place a priority on funding innovative neurobiological research for better prevention, diagnosis, early intervention, and treatment. We also need to raise awareness, eliminate stigma, and remove barriers to treatment.”

Dr. Borenstein said a major challenge faced by the research community is the funding for research, which is not yet at the level required to meet the need. “Scarce resources mean more competition for federal grants, lab closures and fewer incentives to pursue scientific careers which put us at great risk of losing an entire generation of scientists,” Dr. Borenstein added.

The Brain & Behavior Research Foundation is combating this brain drain through a funding model that supports scientists at every stage of their careers and gives young investigators a leg up.

Grants are focused on three priority areas: 1) basic research - to understand what happens in the brain to cause mental illness; 2) new technologies - to advance or create new ways of studying and understanding the brain; and 3) next generation therapies - to reduce symptoms of mental illness and ultimately cure and prevent brain and behavior disorders.

This model allows the Foundation to support new ideas that ultimately become the next generation of treatments and technologies for the field of psychiatry--like new and promising technologies such as optogenetics, and next generation therapies such as deep brain stimulation and transcranial magnetic stimulation.  All three of these important breakthroughs received initial key support from the Foundation’s grants. 

The Foundation also offers events and materials to raise awareness and educate the public. Each month they hold a free webinar featuring a leading mental health researcher. The Quarterly magazine, written for a lay audience, addresses parenting, illness research, and new technologies.  An annual NY Mental Health Research Symposium, where leading researchers present cutting edge discoveries; Women’s Luncheon: Women Breaking Silence on Mental Illness, features a conversation between Hearst Magazine editorial director Ellen Levine and leading advocates for mental health.  Healthy Minds, a Foundation produced public television series, is dedicated to reducing the stigma associated with mental illness by sharing cutting-edge information (including the latest research advances), along with personal experiences from people who live with psychiatric conditions.

Over the past 29 years, the Foundation has been responsible for seeding the research of a generation of brilliant young neuroscientists. This seed money, along with subsequent government funding serves as a model for private / public support for research. The Foundation believes a combination of funding for high-risk, high reward research will generate significant scientific discoveries that will change lives and end the suffering that psychiatric illness brings so many.

“I applaud Research!America and its commitment to making research to improve health a higher national priority,” said Dr. Borenstein. “I am certain that advances in treatment which will result from research will help people with a mental illness live full, productive and happy lives.”



From Washington

Hill Briefing on Asthma and Allergy Research Continuum

Lisa Simpson, M.B., B.Ch., MPHOn May 13, Research!America will join with organizations AcademyHealth, Allergy and Asthma Network, Asthma and Allergy Foundation of America, and GlaxoSmithKline to host the third in a series of congressional briefings featuring basic, clinical, population and health services researchers, as well as the patient perspective. This briefing will illustrate the value of federally-funded research across the continuum in the fight against asthma and allergies.

Lisa Simpson, M.B., B.Ch., MPH, the president and CEO of AcademyHealth, will serve as the moderator and guide the audience through each part of the research continuum. Speakers include patient advocates Vernetta Santos and family; Kirk Druey, M.D., National Institute of Allergy and Infectious Diseases (NIAID) representing the basic research perspective; Catherine Bonuccelli, M.D., GlaxoSmithKline, representing clinical research; Tyra Bryant-Stephens, M.D., The Children’s Hospital of Philadelphia representing population research; and Michael Cabana, M.D., MPH., University of California, San Francisco (UCSF) representing health services research.

May marks National Asthma and Allergy Awareness Month. This is an opportune time to discuss the research  continuum while using asthma and allergies as a case study. Asthma results in 1.8 million ER visits per year and 1 in 10 children suffer from respiratory allergies.

The research continuum briefing series provides an educational opportunity for policymakers and their staff to learn about the distinct, yet equally important, types of research across the discovery, development, delivery spectrum that are working together to address disease. For more information, click here

Conference on Reproducibility and Transparency in Research

Reproducibility has garnered a lot of attention in the past few years, with increasing importance on the ability for researchers to improve transparency and allow for replication of their results. Researchers and policymakers will come together in June for a discussion that will focus on strategies to address challenges of non-reproducible research. The conference, "Best Practices of Biomedical Research: Improving Reproducibility and Transparency of Preclinical Research,” will be held June 9-10 in Bethesda, MD. Research!America is a co-sponsor for the conference, along with the NIH National Library of Medicine and Friends of the National Library of Medicine.

Discussion will highlight positive strategies to achieve significant quality improvement in preclinical research studies. The conference aims to generate constructive and practical messages to benefit producers, as well as users, of biomedical research discoveries. Topics covered will range from the challenges of reproducibility, ethics, open science and data sharing and best practices of reproducible research.

Speakers include: Robert Califf, M.D., commissioner, U.S. Food and Drug Administration; Atul Butte, M.D., Ph.D., director, Institute for Computational Health Sciences, University of California, San Francisco; Christopher Austin, M.D., director, National Center for Advancing Translational Sciences; Arturo Casadevall, M.D., Ph.D., Bloomberg distinguished professor, molecular microbiology and immunology, Johns Hopkins Bloomberg School of Public Health; Lee Ellis, M.D., professor in surgical oncology, University of Texas MD Anderson Cancer Center; Steven Roberd, Ph.D., chief scientific officer, Tuberous Sclerosis Alliance; among many others.

For a full list of speakers and to register for the conference, click here

Surgeon General Crusades Against Opioid Abuse

Surgeon General Vivek Murthy, M.D.As communities across the country grapple with rising death rates linked to opioid abuse, the U.S. Surgeon General Vivek Murthy, M.D., has made the issue a focal point of his public health agenda. “We have to change how our country looks at addiction by removing the stigma that’s still far too often associated with addiction and prevents people from coming forward and getting what they need,” he said recently.

The Surgeon General’s office plans to reach out to practitioners and share information about the risks and benefits of opioids, and safer practices. The goal, Dr. Murthy said, is to help medical professionals treat pain effectively while minimizing the potential for addiction.  He will also issue a report on substance abuse, addiction and health later this year-- the first on the topic since the office began issuing reports in 1964.

During a keynote speech at Health Journalism 2016 in April hosted by the Association of Health Care Journalists, Dr. Murthy said he hopes the report will persuade the public to view addiction “not as a moral failing, but as a chronic disease” that deserves the same treatment and compassion.

Approximately two-million Americans are addicted to opioids – a major gateway to heroin addiction and new HIV infections. The volume of drugs prescribed is four times greater than it was 15 years ago. Changing attitudes is another part of the Surgeon General’s plan to address opioid addiction. That calls for extensive public education and a concerted effort to dispel the stigma that surrounds addiction, Dr. Murthy added.

In the News

Media Matters

Advocacy Drives Medical Progress Forward

Lorri CareyResearch!America president and CEO Mary Woolley penned an op-ed for The Huffington Post featuring ALS Association patient advocate Lorri Carey’s personal story regarding her battle with ALS. Woolley called for robust funding for the National Institutes of Health in FY17 to support research for ALS and other health threats.

Senate Innovations Bill

Research!America’s letter, signed by 160 organizations, to Senate HELP committee leadership in support of the Senate Innovations bill was featured in The Cancer Letter and POLITICO Pro.

Zika Research and FundingGeorges Benjamin, M.D.

In a National Geographic article about the state of U.S. preparedness for the Zika virus, Research!America board member Georges Benjamin, M.D., executive director of American Public Health Association (APHA), called for a more consistent approach in public health funding to support health departments. In a POLITICO Pro brief, Research!America was among the organizations included in a sign-on letter to Congress seeking emergency funding to combat Zika.

Immigration, Science and the Election

In a Nature magazine article about the anti-immigration positions of candidates and the impact on U.S. research dominance, Woolley voiced her support for diversity in the scientific community.

Sudip Parikh, M.D.

E-Cigarettes Research 

Research!America board member, Sudip Parikh, Ph.D., vice president and general manager of health and analytics at Battelle, wrote an op-ed for Health Affairs underscoring the need for more research to understand the health effects of e-cigarettes.

Global R&D Funding

Following the release of a Global Health Technologies Coalition report which called for doubling global investments in R&D, Woolley said that the request represents a small fraction of spending compared to other national priorities, such as U.S. homeland security, in a CNN article.

Gun Violence Research

In a JAMA article about the impact of the Dickey Amendment on gun violence research at federal health agencies, Woolley said the agencies differ in terms of budgeting for various types of research.

Dengue VaccineElias Zerhouni, M.D.

Research!America board member Elias Zerhouni, M.D., president, global research and development, Sanofi, was quoted in a Financial Times article about the World Health Organization’s endorsement of the use of a dengue fever vaccine in countries with high rates of illness.

Science Outreach

In a letter to the editor published in Issues in Science and Technology, Woolley urged the scientific community to cultivate a culture that encourages public outreach and engagement.

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Luck shouldn't play a role in why I'm alive.
Laurie MacCaskill, a seven-year pancreatic cancer survivor