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. For questions or comments contact Jennifer Santisi, editor@researchamerica.org

From Research!America

New Map and Blog Captures Candidates' Views on Medical Research

Health threats from Alzheimer’s disease to the Zika virus are dominating national headlines but are they major topics on the campaign trail?  Are candidates sharing their views about public and private sector research to treat and prevent these and other serious conditions? As part of the national voter education initiative, Campaign for Cures: Vote for Medical Progress, Research!America and partners have made it easier for voters to see if candidates are speaking out about medical innovation with a new interactive online map and blog.

The user-friendly map of the U.S. features hundreds of quotes on medical progress from candidates across the political spectrum. Visitors also have the option to contact their candidates directly through the Campaign for Cures website. “The election cycle is the ideal time to ask candidates for President and Congress what they would do to assure a healthier future for Americans,” said Mary Woolley, president and CEO, Research!America.  

In addition to the interactive map, the inaugural Campaign for Cures blog is packed with information related to the election, patient stories, events, and commentary on science, research, and innovation. The blog is managed by former USA Today editor and health reporter Janice Lloyd.

Research!America sent letters to the Democratic National Convention (DNC) and Republican National Convention (RNC) urging them to make medical progress and prevention an important element in their 2016 platforms. And in testimony at the DNC Platform Drafting Committee hearing in Phoenix, Arizona on June 17, Woolley called for a stronger national commitment to research. Research!America also reached out to the RNC platform committee for upcoming opportunities to testify about the need for faster medical progress.

Visit the blog and map at www.campaignforcures.org

Federal Health Officials Join National Health Research Forum Panels

(L to R) Robert Califf, M.D.; Tom Frieden, M.D.Top leaders in government, industry, patient advocacy and academia will be among the panelists for Research!America’s 2016 National Health Research Forum on Thursday, September 8 at the Newseum in Washington, D.C. Confirmed panelists include Robert Califf, M.D., commissioner, Food and Drug Administration; Tom Frieden, M.D., director, Centers for Disease Control and Prevention; France Cordova, Ph.D., director, National Science Foundation; Andrew Bindman, M.D., director, Agency for Healthcare Research and Quality; and Anthony Fauci, M.D., director, National Institute of Allergy and Infectious Diseases.

(L to R) France Cordova, Ph.D.; Andrew Bindman, M.D.; Anthony Fauci, M.D.

The event, titled Straight Talk: New Thinking on Tough Challenges, will feature thought-provoking panel discussions on complex and sometimes controversial issues that could potentially impact medical progress and the scientific community.  How will bold initiatives such as the Cancer Moonshot and precision medicine, changes in regulatory science, public-private partnerships, value-based care and innovative studies to combat and prevent major diseases influence advocacy for research, patient engagement and research and development?

Moderated by high profile journalists, Research!America’s National Health Research Forum is the only event of its kind that convenes the directors of relevant federal agencies and other leaders within the research ecosystem in a setting where a distinguished audience may hear from, ask questions of and interact with those who are helping advance public health and shape the future of medical progress.
 

To register, click here.

Federal Policy Update

This summer marks the one-year anniversary of the House passage of the 21st Century Cures Act (H.R. 6). The Senate has spent the intervening year passing a total of 19 bipartisan bills through the Senate Health, Education, Labor, and Pensions (HELP) Committee aimed at accelerating the discovery, development and delivery pipeline. Negotiations to finalize a legislative package are ongoing. 

The Senate and House Commerce, Justice, Science Appropriations Committees advanced their appropriations bills, which funds NSF at $7.5 billion and $7.4 billion, respectively in FY17. Both proposals fall short of the $8 billion Research!America is advocating for in FY17. The Senate and House Agriculture, Rural Development, and FDA Appropriations Committees advanced their FY17 appropriations bills, which include $2.77 billion and $2.76 billion in budget authority for FDA, respectively.  While modestly better than the President’s budget, the FDA cannot fulfill its massive list of responsibilities with nominal budget increases.

The Senate advanced their FY17 Labor, Health and Human Services, Education and Related Agencies (Labor-HHS) bill through the Appropriations Committee with strong bipartisan support. The House version is moving through the committee process as of early July. In both the Senate and House, the National Institutes of Health (NIH) has fared well, with $2 billion and $1.25 billion respective increases in the base budget. The Centers for Disease Control and Prevention (CDC) is facing a more complicated appropriations fate, with a budget cut of $118 million or 1.66% in the Senate version and a nominal increase in the House version, but with much of the additional funding directed to Zika and the opioid epidemic. In the Senate, the Agency for Healthcare Research and Quality (AHRQ) received a 3% reduction compared to a 16% reduction in the House bill.  

As experts warn of a potential Zika virus outbreak within the U.S., Congress remains gridlocked on the issue of emergency funding for further research and vaccine development. Nearly four months after the president requested $1.9 billion in the fight against Zika, consensus on emergency funding is stalled due to a lack of agreement on the need for new funding and controversial policy riders. 

The Senate Commerce Committee marked up a National Science Foundation (NSF) reauthorization, the American Innovation and Competitiveness Act (S. 3084), in late June. The Committee-passed legislation authorizes 4% increases for NSF in FY17 and FY18. The House passed their NSF reauthorization, the America COMPETES Reauthorization Act (H.R. 1806), in May 2015. It is not likely that either version will advance further before the end of this Congress.

During a late-June Cancer Moonshot summit, Vice President Biden announced several proposals to advance new cancer treatments, including the creation of an Oncology Center of Excellence at the Food and Drug Administration (FDA). The new center is tasked with creating efficiencies by coordinating all FDA cancer-related activities. Dr. Richard Pazdur will serve as acting director of the center.

 

 

Action Alert

Share Your Story: Why do you Fight for Faster Medical Progress?

We each have our own reasons for fighting for faster medical progress. Tell us yours.  Whether you are a patient, a caregiver, a researcher, or connect in some other way to the urgent need for faster medical progress, we want to hear from you. We may publish your story on our website, motivating others to join the fight!

To share your story with us, click here

Panelists Discuss Biomedical Research and the Economy

“It’s all about competition,” says Walter Koroshetz, M.D., director of the National Institute of Neurological Disorders and Stroke, referring to America’s ability to remain a global leader in science. “China’s budget in biomedical research has doubled every five years while the National Institutes of Health budget remained relatively flat. The good news is we have the tremendous ability to bring young people into the field and give them the tools and the knowledge to compete against everyone in the world.” 

Koroshetz joined elected officials, business leaders, university presidents from across the state, leaders of biotech companies and nationally-ranked medical centers, and research scientists for the forum, “Medical Research: The Right Prescription for Economic Growth,” co-hosted by Research!America and Northeast Ohio Medical University at the NEOMED Education and Wellness Center in Rootstown, Ohio on June 6. The panel discussed global competitiveness, public-private partnerships and other issues impacting medical research, the economy and public health.

Research!America president and CEO Mary Woolley released new public opinion survey data highlighting Ohioans' views on medical and health research. An overwhelming majority of residents say it is important for the state to be a leader in education (89%) and in medical and health research (87%), she said.Susan Dentzer

The panel was moderated by Susan Dentzer, president and CEO, The Network for Excellence in Health Innovation. Dentzer asked panelists to share what they consider to be the next important step to ensure that biomedical research is able to advance and  grow the economy, in both Ohio and nationally.

Competing priorities in Washington affect the level of funding for the federal health agencies, said Sudip Parikh, Ph.D., CP and GM of Health & Analytics, Battelle. Currently, pell grants compete with funding for the NIH and the Centers for Disease Control and Prevention in spending bills. It has to be disconnected in order for us to make smart investments rather than those set by formulas, he added.

Other panelists included Michael Drake, M.D., president, Ohio State University; Joe Kanfer, chairman and CEO, GOJO Industries; Thomas Zenty, CEO, University Hospitals; Lucinda Maine, Ph.D., EVP and CEO, American Association of Colleges of Pharmacy. For a livestream of the forum, click here.  

#CuresNOW Day of Action

The Senate’s companion legislation to the House 21st Century Cures Act is capturing the attention of research advocates across the nation. Many notable individuals and organizations joined the #CuresNOW Day of Action on June 7 organized by Research!America and EveryLife Foundation for Rare Diseases urging Congress to move the bill forward.

Research!America engaged members, policymakers and the public using the advocacy tool, Thunderclap.  A virtual flash-mob, Thunderclap sends out a prewritten message on social media on the same day at the same time for everyone signed onto our campaign in the hopes of amplifying the message. The #CuresNOW Day of Action Thunderclap attracted over 170 individuals and reached a total of 302,184 profiles on social media. The Thunderclap’s message directed individuals towards Research!America’s #CuresNOW Day of Action advocacy platform, which allowed individuals to message, call and tweet their members of Congress. Through our platform, nearly 400 advocates sent over 1,100 emails!

Among those who joined the Day of Action were the House Energy and Commerce Committee, National Organization for Rare Diseases, 21st Century Cures authors Representatives Diana DeGette (D-CO-01) and Fred Upton (R-MI-06), American Association for Cancer Research, and Friends of Cancer Research. We must never forget the power of advocacy and the importance that we as a community of patients, researchers, caregivers, and industry members, must make sure our message is heard. Time is running out. Patients need #CuresNOW! 

Reproducibility and Transparency in Research

Under the leadership of Friends of the National Library of Medicine (FNLM), and in partnership with the National Library of Medicine, Research!America co-sponsored a conference titled “Best Practices Of Biomedical Research: Improving Reproducibility and Transparency of Preclinical Research.” 

The June 9-10 conference, held in Bethesda, Maryland, brought together researchers and opinion leaders to engage in robust discussions on the challenges of reproducibility as well as dialogue on strategies and practices supporting reproducible research. Six panel discussions also included lively dialogue on data sharing and open science. 

Food and Drug Administration commissioner Robert Califf, M.D., spoke on the importance of gathering and sharing data from preclinical research to help shed light on early stage research. Some participants of the conference agreed that it can be difficult to define reproducibility without a common definition. Others suggested that in place of a common definition, an expanded set of terms may help address the challenges of reproducibility. A summary report from the conference will be developed and available through the Friends of the National Library of Medicine. FNLM is a coalition dedicated to increasing public awareness of the National Library of Medicine, the world’s largest biomedical library, and to support its many programs in research, education and public service. 

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

RESEARCH!AMERICA EXTENDS SPECIAL THANKS TO OUR SUPPORTERS WHO HAVE CONTRIBUTED SINCE THE PUBLICATION OF OUR May/June NEWSLETTER.

2016 Advocacy Awards

Benefactors:

Rosenfeld Heart Foundation

Sponsor:

Biogen

Celgene Corporation

Mayo Clinic

Shire

Campaign for Cures

American Society for Microbiology

Cold Spring Harbor Laboratory

 

University of Maryland School of Medicine

 

Ohio Research Forum

University Hospitals

Wright State University

Conference Room Naming at New Research!America Headquarters

Rogers Family Foundation

General Support

The Baltimore Family Fund

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

SPECIAL THANKS TO NEW AND RENEWING RESEARCH!AMERICA ALLIANCE MEMBERS

New Members

Myasthenia Gravis Foundation of America, Inc.

Scleroderma Foundation

Renewing Members

Asthma and Allergy Foundation of America

American Association of Colleges of Pharmacy

American College of Neuropsychopharmacology

American College of Surgeons

American Dental Education Association

American Geriatrics Society

American Institute for Medical and Biological Engineering (AIMBE)

American Medical Association

American Pain Society

Americans for Medical Progress

Amgen

Association of Medical School Microbiology and Immunology Chairs

Astellas Pharma US, Inc.

Aultman Hospital

The Brain and Behavior Research Foundation

Broad Institute

Case Western Reserve University

Duke University School of Nursing

EB Research Partnership

Emory Woodruff Health Sciences Research-School of Medicine and Yerkes Primate Center

Fight Colorectal Cancer

Friends of Cancer Research

Gates Center for Regenerative Medicine

Georgetown University Medical Center

The Gladstone Institutes

Johns Hopkins Medicine

Kent State University

La Jolla Institute for Allergy and Immunology

McLaughlin Research Institute

Nebraska Coalition for Lifesaving Cures

RAND Corporation

Sanofi

Shire

Society for Immunotherapy of Cancer

Takeda Pharmaceuticals U.S.A., Inc.

University of Chicago Pritzker School of Medicine

University of Maryland School of Medicine

University of North Carolina Gillings School of Global Public Health

University of Pennsylvania School of Nursing

Wake Forest University School of Medicine 

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

Regular Features

President's Letter

Mary Woolley, President and CEOLess than four months from now we will know the outcome of the elections. We consider every day between now and November 8 an opportunity to weigh in with candidates for President and Congress to ask them to speak out on how, if elected, they would make assuring medical progress a priority, taking steps to ramp up research and innovation to find the solutions to what ails us. When I say “we” I hope I can count on you to join in that outreach, since citizen interest, as weighed by numbers of proponents, drives policymaker interest.

Our newly-released interactive map already carries nearly 500 quotes from challengers and incumbents alike – and more will be added as congressional primaries take place around the nation. As a concerned stakeholder, please take a moment to determine whether the candidates you will choose between have weighed in. If they haven’t, there is an easy way to ask them to do so;  if they have, thank them and let them know if you agree or disagree with their point of view. You can add information their campaigns will be interested in knowing, for example, your personal reasons for supporting more research, and/or your career commitment to serving the public’s interest as part of the ecosystem of research and innovation. You can do this in person! Congress will be on an extended recess that will include campaigning, beginning July 18. Visit www.campaignforcures.org.

I hope to see you – in person or virtually – as a fellow advocate during the intense campaign ahead. 

Member Spotlight: Cancer Support Community

Founded: 1982
Location: Washington, D.C.
Mission: The Cancer Support Community is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. 

Kim ThiboldeauxAs the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC) is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. CSC achieves its mission through three areas: direct service delivery, research and advocacy. The organization includes an international network of Affiliates that offer the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C. and across the nation. 

One recent aim of the Cancer Support Community (CSC) has been to increase awareness of cancer clinical trials, a key to innovations in medical research. Even though approximately 20 percent of patients are eligible to participate in a clinical trial, only as few as 3-4 percent choose to be a part of them.

“Our research shows that patients do not fully understand cancer clinical trials and that there are many persistent myths and misconceptions about them. In order to      increase innovation in cancer research, we need to address the concerns of patients and educate them about clinical trials as a potential treatment option that could be right for them,” said Kim Thiboldeaux, CEO at the Cancer Support Community.

The Cancer Support Community launched Frankly Speaking About Cancer Clinical Trials in June to fill this need. The multimedia program explains clinical trials and answers common questions of patients and their families. 

The organization is also collaborating with Vice President Biden’s Cancer Moonshot initiative. The Cancer Support Community hosted Cancer Moonshot Summits at 31      locations across the country on June 29 and shared insights on the patient experience at the White House’s D.C. Moonshot Summit.  

In addition to these efforts, one of the core beliefs of the Cancer Support Community is that cancer research needs to include not just biomedical research, but also behavioral and psychosocial research.

The Cancer Support Community’s Research and Training Institute in Philadelphia is focused on better understanding the patient experience in order to improve quality of care. The institute conducts behavioral and psychosocial research and translates findings into programs to better serve patients and their caregivers. 

 “We must understand all of the challenges that patients face—socially, emotionally financially, and more—in order to put forward a true integrated model of patient care. The patient voice is at the center of everything that we do,” said Kim Thiboldeaux.

The Cancer Support Community’s goals align closely with Research!America’s vision to make research to improve health a higher national priority. Through research, educational programs and advocacy, the Cancer Support Community is working to elevate biomedical as well as psychosocial and behavioral research in the eyes of critical stakeholders. 

For more information, call the toll-free Cancer Support Helpline at 888-793-9355, or visit www.CancerSupportCommunity.org.

From Washington

Cancer Moonshot Summit Ushers in Hope for Cures

Vice President Joe BidenA government-wide effort is underway to help facilitate 10 years' worth of cancer research in five years. Announcements across a number of agencies were made recently as part of the Cancer Moonshot initiative. Programs range from unleashing the government's supercomputing power on massive health care data sets to redesigning a website to help patients who are looking for clinical trials. 

The Commerce Department is planning to roll out a new program to speed up the review of patent applications for cancer immunotherapies. The program targets one of the most promising areas of cancer research, which focuses on training the body's immune system to identify and destroy tumor cells. The Food and Drug Administration (FDA) announced that more than 20 drug companies will get an accelerated path to studying not-yet-approved treatments that would normally be delayed more than a year. 

The announcements were made in the wake of the first National Cancer Moonshot Summit hosted by Vice President Joe Biden at Howard University on June 29. In a national day of action, over 270 events took place across the country with the goal of building support for the administration's $1 billion request to fund the fight against cancer. 

“Cancer touches everyone in some way. Almost every one of us in here has lost someone relatively close to us,” Biden said in his opening remarks at the summit. “We’re all here because we can do something about it.”

A survey commissioned by Research!America  shows that 50% of Americans favor a tax increase to support the moonshot initiative and research to defeat cancer. Mary Woolley, president and CEO of Research!America, shared these survey results and other advocacy initiatives in a letter to the White House Cancer Moonshot Task Force. 

AcademyHealth Honors Research!America CEO with Chair Award

(L to R) Mary Naylor; Katy B. Kozhimannil; Mary WoolleyResearch!America president and CEO Mary Woolley is the recipient of the 2016 AcademyHealth Chair Award, recognizing a national leader who has significantly contributed to the health and health care of Americans by moving health services research into policy and practice.    

Accepting the award at AcademyHealth's Annual Research Meeting in Boston on June 27, Woolley urged attendees to step up their engagement with elected officials and those seeking office. "They work for us; for you," she said. "If you haven’t yet reached out to candidates running to represent you in the White House and the Congress, you are missing an opportunity to assure that your work in the service of the public’s interest will be well supported in the years ahead."

Woolley suggested tapping into public aspirations and using language that resonates with non-scientists, policymakers included. "My advice is to take a deep breath, take the leap and change the wording from ‘health services research’ to ‘health care delivery research’. It won’t solve the on-going challenge of ensuring adequate support for the field, but I believe it will help," she said.  

Previous recipients of the award, one of the most prestigious honors bestowed by AcademyHealth, include Senators Edward Kennedy and William Frist, former Health Affairs editor John Iglehart, former director of the Agency for Healthcare Research and Quality John Eisenberg, and former AcademyHealth president and CEO W. David Helms. 

MIT Report Emphasizes Importance of Convergence Research

Major advances in the fight against deadly and disabling diseases will stem from convergence-based research, a recent MIT report, Convergence: The Future of Health, argues. Convergence involves merging approaches and insights from traditionally distinct fields, such as engineering, physics, computer science, chemistry, mathematics and the life sciences.   

“There are many areas ripe for discovery and innovation using a convergent approach-- from health and aging to energy, food and water to understanding the universe at large,” said France Cordova, Ph.D., director, National Science Foundation, during an event at the National Academies of Sciences, Engineering, and Medicine in Washington, D.C. on June 24.

Realizing the full potential of a convergence revolution will require much more ambitious and strategic coordination and collaboration across industry, government, and academia, the report says. The authors emphasize one critical barrier above all-- the shortage of federal funding for convergence fields. 

The report was co-chaired by Tyler Jacks, the David H. Koch Professor of Biology and director of MIT’s Koch Institute for Integrative Cancer Research; Susan Hockfield, noted neuroscientist and president emerita of MIT; and Phillip Sharp, Institute Professor at MIT and Nobel laureate. 

For the full report, click here.  

In the News

Media Matters

Medical Research & the Economy

Susan DentzerSudip Parikh, Ph.D.; Lucinda Maine, Ph.D., R.Ph.

The forum, “Medical Research: The Right Prescription for Economic Growth” co-hosted by NEOMED and Research!America on June 6 forum was featured in The Review (Alliance, Ohio), Cleveland Jewish News, WKSU-FM (NPR), Crain’s Cleveland Business, The Business Journal, and The Akron Beacon Journal. Remarks from Research!America president and CEO, Mary Woolley, and board members, Sudip Parikh, Ph.D., vice president and general manager of health and analytics at Battelle; Jay Gershen, DDS, Ph.D., president, Northeast Ohio Medical UniversityLucinda Maine, Ph.D., R.Ph., executive vice president and CEO, American Association of Colleges of Pharmacy; and Susan Dentzer, president and CEO, Network for Excellence in Health Innovation, were highlighted.

Gun Violence Research

Georges Benjamin, M.D.

In an ABC News article about limitations on the CDC’s ability to support gun violence research, Woolley said these barriers are preventing government efforts to minimize public health safety risks.

In a New York Times Well blog article about gun storage and children, Research!America board member Georges Benjamin, M.D., executive director of American Public Health Association (APHA), suggested initiating conversations as part of a broader discussion about safety which can address other concerns such as food allergies and swimming pool safety.

Campaign For Cures

Research!America letters to the Republican and Democratic National Committees urging both parties to include medical progress into their platforms were featured in Morning Consult 

In a STAT article on the presidential candidates’ views on medical research, Woolley shared the differences between Hillary Clinton and Donald Trump on science policy. Woolley also underscored the importance of presidential and congressional candidates discussing research during the election season on WBAL-AM (Baltimore) and as a guest on the public affairs show Closer Look with Rose Scott and Jim Burress on Atlanta’s NPR affiliate WABE-FM.

National Institutes of Health Funding

The Hill and POLITICO Pro quoted Ellie Dehoney, vice president of policy and advocacy, regarding the National Institutes of Health receiving a $2 billion increase in the Senate FY17 spending bill. “It’s an amazing number. But the devil’s in the details,” she said.

James Madara, M.D.

Digital Health Tools       

In a Becker’s Hospital Review article, Research!America board member, James Madara, M.D., EVP and CEO, American Medical Association commented that some digital health tools like radiation therapies and emerging biologics are effective for patient care but not all available products “have an appropriate evidence base.”

 

Message to Congress about Climate ChangeRush Holt, Ph.D.

Research!America board member Rush Holt, Ph.D., CEO, American Association for the Advancement of Science (AAAS), was quoted in The Washington Post about a letter sent to members of Congress, led by AAAS and signed by top scientific organizations underscoring the fact that human-caused climate change is real and poses risks to society. 

Media Contacts

Suzanne Ffolkes
VP Communications
571-482-2710

Anna Briseño
Communications Manager
571-482-2737

You can change the image of things to come. But you can’t do it sitting on your hands … The science community should reach out to Congress and build bridges.
The Honorable John E. Porter