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 editor@researchamerica.org

In This Issue of The Research Advocate: Spring 2019

From Research!America

Research!America Celebrates 30th Anniversary at Advocacy Awards Dinner

The 2019 Advocacy Awards Dinner, held at the Andrew W. Mellon Auditorium on March 13, 2019, was a celebration not just of the incredible honorees, but of Research!America’s 30 years of advocating for health research. In recognizing the awardees, acknowledgment was also given to the inspiring progress that has been made in health and medical research over the past three decades.

In March 1989, The Honorable Louis W. Sullivan, MD was confirmed as Secretary of Health and Human Services. Thirty years later, he was the recipient of the John Edward Porter Legacy Award, generously supported by Ann Lurie. The Honorable John Edward Porter gave a warm and touching introduction of Dr. Sullivan. Lou Sullivan is a not just perfect example of what a public servant should be, he said. “Lou Sullivan is a perfect example of what a human being should be.”

Dr. Sullivan also reflected on his experiences in 1989. “Thirty years ago I was excited by the opportunity to serve as secretary,” Dr. Sullivan said, “to give greater voice and leadership to address the health needs of the nation.”

U.S. Representative Nita M. Lowey (D-NY-17) graciously accepted the Edwin C. Whitehead Award for Medical Research Advocacy. As she looked back at some of the innovations of the prior 30 years, she commented, “research has unlocked the mysteries of the human genome, and led to advances such as immunotherapy that provide a chance at survival when just years ago the same diagnosis would be a death sentence.” U.S. Senator Richard Shelby (R-AL) also received the Whitehead Award.

NIH Director Francis Collins presented the Paul G. Rogers Distinguished Organization Advocacy Award to the Cystic Fibrosis Foundation. “It was a rainy night in 1989,” he described, when he and the rest of the team of researchers “identified a three-letter deletion in a previously unknown gene on chromosome 7” and knew they had found the cause of cystic fibrosis. Melissa Shiffman, a cystic fibrosis patient and advocate, shared how the research on treatments conducted since then have impacted her life. CFF’s “steadfast dedication to drug development research while searching for a cure has allowed me to live a much fuller life than was expected when I was diagnosed in 1978,” she said.

Other honorees included David R. Williams, PhD, Florence Sprague Norman and Laura Smart Norman Professor of Public Health, Chair of the Department of Social and Behavioral Sciences at the Harvard T.H. Chan School of Public Health, and Professor of African and African American Studies and Sociology at Harvard University, who received the Herbert Pardes Family Award for National Leadership in Advocacy for Research; Susan Hockfield, PhD, President Emerita, Massachusetts Institute of Technology and Professor of Neuroscience and member of the Koch Institute for Integrative Cancer Research, who received the Geoffrey Beene Foundation Builders of Science Award; Denny Sanford, health care philanthropist and longtime supporter of Sanford Health and its Sanford Research arm in Sioux Falls, South Dakota, who received the Gordon and Llura Gund Leadership Award; and Siddhartha Mukherjee, MD, DPhil, physician, oncologist, and author, Assistant Professor of Medicine at Columbia University Medical Center, who received the Isadore Rosenfeld Award for Impact on Public Opinion.

 

Looking for more? View the videos on YouTube, check out our photos on Flickr, or view the downloadable photo wrap-up!

Looking Back at Accomplishments of the Past and Potential for the Future: Research!America’s 30th Annual Meeting of Members

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“The future will be the future you create,” said Susan Hockfield, PhD, President Emerita of MIT and Professor of Neuroscience at the Koch Institute for Integrative Cancer Research. She was joined by Seema Kumar of Johnson & Johnson in a “fireside chat” at the Research!America 30th Annual Meeting of Members, held March 13, 2019 at the Willard Hotel. The meeting included a look back at 30 years of research and innovation, and a thoughtful discussion of what the future could hold.

Research!America board chair, The Honorable Michael N. Castle discussed the future of Research!America as he presented the new organizational mission statement. “The board approved a new mission statement that holds true to our rich history of bold advocacy and guides our future,” he said. “Our mission statement is now – the Research!America alliance advocates for science, discovery, and innovation to achieve better health for all.”

President and CEO Mary Woolley presented Research!America’s accomplishments during 2018 and a look at priorities for the coming year. “We want to grow federal funding across the spectrum of health-focused research and science writ large – we can’t leave out the rest of science,” she said, adding, “we’re going to be fighting for a policy climate where public and private enterprises have every chance to realize their goals.”

Admiral Brett P. Giroir, Assistant Secretary for Health at the Department for Health and Human Services (HHS) was a featured speaker and provided insights on many health challenges the United States has faced and continues to face. Life expectancy, he pointed out, steadily increased between 1900 and 2015, and “this didn’t happen by itself. It happened because of research. We got here because of research and the only way we’re going to move forward is to have a staunch commitment to research.”

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However, the U.S. faces many health challenges in the 21st century. Adm. Giroir provided overviews of actions to fight the opioid crisis. Last year, he said, 2.1 million people were addicted to opioids and 11.4 million misused opioids. “The main reason for opioid misuse is pain,” he said. “If we don’t solve the pain crisis in the United States with new approaches, new research from basic mechanisms and new targets, to how we deliver and implement, we will never solve the opioid crisis.”

He also discussed the tremendous progress made in treating HIV. “If we could reach everybody who has HIV and put them on therapy,” he suggested, “we could stop HIV tomorrow. Our goal is to translate that theoretical possibility into reality.”

Adm. Giroir’s remarks were followed by the fireside chat with Seema Kumar and Dr. Hockfield. Dr. Hockfield reflected on her tenure as President of MIT, and her thoughts on the developments of the past 30 years and what the next 30 years might hold. “One way to think about the future we’re going to be living in,” Dr. Hockfield said, “is to think about the future we’re living in today. The 21st century’s technology transformation story,” she continued, “is the convergence of biology with engineering.” She shared how MIT scientists are using viruses to build batteries, for example – research exploring cancer that may contribute to energy sustainability worldwide. Dr. Hockfield’s upcoming book, The Age of Living Machines: How Biology Will Build the Next Technology Revolution, published May 7, 2019, will explore this convergence.

Dr. Hockfield also described how she had the good fortune to work in an interdisciplinary lab to see “the magic of people coming together across disciplines” to solve challenging problems. By creating opportunities where people can gather together and bring perspectives from a number of different points of view, we can discover “the little jewel that holds the key for turning things around,” she said.

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Melissa Shiffman, a cystic fibrosis patient, then addressed the group to discuss the importance of advocacy for health research. She shared her experience living with the disease and that although research helped her live a longer life, it was the Cystic Fibrosis Foundation that has given her the opportunity to become an advocate and find her voice. Her “first day on the Hill was a long emotional day,” she said, “and I was drained from sharing personal details about my life, but I never felt more energized and empowered.”

She also shared how important advocacy and research has been in advancing treatments for CF. “We proudly talk about cystic fibrosis being the best story in medicine,” she said. “Families who share a rare disease start grassroots fundraising and within decades we have an exciting drug pipeline attacking the disease from many angles, and within the next year we will have treatments that benefit 95% of people with CF.”

The final speaker at the Annual Meeting was Dr.  Gary Gibbons, the director of the National Heart, Lung, and Blood Institute at the National Institutes of Health. He focused on three key priorities of the NHLBI: health disparities in at-risk populations, new treatments for sickle cell, and clinical research for cystic fibrosis.

Heart disease, he said, is emblematic of the issue with health disparities. “We’re starting to identify high-risk communities,” adding, “in a lot of communities having negative outcomes in one sphere,” such as opioids, “also have it in another,” such as cardiovascular disease.

Research!America Launches Raise The Caps Campaign

Under the 2011 Budget Control Act, Fiscal Year 2020 (FY20) defense spending must be cut by $71 billion and non-defense discretionary (NDD) spending by $55 billion relative to the current federal budget. Unless Congress passes and the president signs a bill raising the FY20 budget caps, cuts to science agency budgets are inevitable. On March 19, 2019, Research!America, together with 20 partner organizations from across the science spectrum, launched a targeted advocacy campaign to urge Congress to secure a bipartisan deal to raise these budget caps and make the case that science agencies need and deserve increased funding.

Through a targeted web page and action page, Research!America offers advocates a range of opportunities to make their voices heard. Advocates can send messages to their congressional delegations, spread the word using social media, sign a petition, or use a provided script to call their congressional offices. Research!America also ran print and digital ads in targeted media markets the week of April 8-12 2019. As of April 29, 2019, over 359 emails have been sent, and Research!America tweets about #RaiseTheCaps earned over 75,000 impressions over 28 days.

Raise the Caps partners have supported this effort through outreach to their networks, social media, and other advocacy efforts. Mary Woolley penned a blog post for The American Society of Human Genetics, and the American Physical Society secured an op-ed placement for a piece written by a member and graduate student. And on May 2, Research!American and Raise the Caps partners sent a letter to House and Senate Leadership today emphasizing the need for a bipartisan agreement to raise the budget caps.

As reported in this month’s Federal Policy Update, Speaker Nancy Pelosi and Leader Mitch McConnell have agreed to begin talks on a deal to raise the budget caps for defense and non-defense spending. Leader McConnell has said reaching a deal will be his top legislative priority after the April recess, but that may be easier said than done.  

The drumbeat of support must continue. Please contact us if you are interested in joining this movement as a partner, and take action by visiting www.researchamerica.org/raise-the-caps today!

Mary Woolley Inspires Young Scientists to Advocate for Action

Research!America President and CEO Mary Woolley had several opportunities this spring to speak with young scientists about the importance of advocating for science and discovery. On March 7, 2019, Woolley was the keynote speaker at the University of Miami’s first ever Graduate and Post-Doctoral Research Symposium. She shared Research!America's newly updated public opinion survey data, encourage students to become advocates for science, and emphasized the urgency of the looming sequestration-driven budget caps. Without a deal, she noted, nearly $4 billion could be cut from NIH.

On March 21, 2019, Woolley provided a keynote address at an event convened by the National Academies of Science, Engineering, and Medicine, the meeting of the New Voices in Science, Engineering, and Medicine. The group, a cohort of emerging leaders, heard from Woolley about the urgent need for scientists to advocate for their work. “I look forward to the day that every scientist will be comfortable in saying and conveying -- in their words and their actions, “I work for you,” Woolley said.

Federal Policy Update

The first several months of the 116th Congress have been a busy time in our nation’s capital. The new Congress was officially sworn in during what would become the longest government shutdown in history. The shutdown harmed hundreds of thousands of federal employees and wreaked havoc on critical science-focused agencies such as FDA and NSF. Research!America weighed in on multiple fronts urging a swift resolution to the impasse. In February, Congress passed legislation to fund the government through the remainder of FY19, providing an increase of more than $300 million in funding over FY18 levels for the NSF, and an increase of over $260 million in funding over FY18 levels for the FDA.[1] 

The FY20 appropriations process is well underway, with the House Appropriations Committee scheduled to take up its first funding bill, for Labor, Health and Human Services, and Education, the second week of May. Research!America will be closely monitoring the actions of the Committee and will be ready to weigh in to ensure agencies such as the CDC, NIH, and AHRQ are funded at the levels necessary to continue and further improve on their health and R&D missions.

At the same time, Speaker Nancy Pelosi and Leader Mitch McConnell have agreed to begin talks on a deal to raise the budget caps for defense and non-defense spending.  Under the 2011 Budget Control Act, FY20 defense spending must be cut by $71 billion and non-defense discretionary spending by $55 billion relative to the current federal budget. Unless Congress passes and the president signs a bill raising the FY2020 budget caps, cuts to science agency budgets are inevitable. Leader McConnell has said reaching a deal will be his top legislative priority after the April recess, but that may be easier said than done. Research!America, in partnership with multiple organizations, has launched a #RaisetheCaps campaign to urge Congress to act quickly to raise the caps and, in doing so, advance national priorities like economic competitiveness and faster medical progress. Strategic investments fuel health, security, and prosperity; the budget caps stifle all three.

Securing the repeal of the medical device tax is another steep challenge. Taxes laser-focused on a key contributor to medical progress is a mistake in fact and in precedent, and we will continue to play a visible role in efforts to end this tax as soon as possible.  Congressman Ron Kind (D-WI) and Senator Amy Klobuchar (D-MN) have introduced legislation in the House and Senate, respectively, to repeal the tax and both bills have bipartisan support.

 

 

Research!America Board Approves a New Mission Statement

As Research!America commemorates 30 years of advocacy for science and health research, we have taken the opportunity to reflect on successes of the past, and plan for opportunities and challenges ahead.

Research!America’s Board of Directors recently completed a thoughtful assessment of our mission statement to ensure that it clearly communicates our steadfast commitment to achieving better health through advocacy for resources and policies that support scientific discovery and spur innovation.

A task force of the board, comprised of representatives from across our membership stakeholders, worked several months to ensure that the mission statement of Research!America is both inspirational and aspirational, and communicates the essence of our vision to achieve better health through research.

This exercise resulted in the Board of Directors approving a new mission statement that holds true to our rich history of bold advocacy and guides our future. Our mission statement is:

The Research!America alliance advocates for science, discovery, and innovation to achieve better health for all. 

During the mission review process, the board also identified an opportunity to enhance branding for Research!America by updating the tagline used in conjunction with Research!America’s logo. Over the years, we have defined our organization as an alliance for discoveries in health, our former tagline. We believe there is a great opportunity to put the spotlight on the interconnectivity of discovery and innovation that leads to better health. Our new tagline – Discovery. Innovation. Health. – Clearly communicates Research!America’s vision, and the dedication of our alliance members, to bring about better health for all people through a robust ecosystem that promotes discovery and innovation.

 

Johnson & Johnson and Children’s National launch JLABS @ Washington D.C.

On April 9, Johnson & Johnson and Children’s National Health System announced a collaborative launch of JLABS @ Washington, D.C. Located at the new Children’s National Research and Innovation Campus. This facility will bring together broad stakeholders and expand Children’s National research programs in pediatric genomic and precision medicine.

“It’s clear that Washington, D.C. has the talent, ideas, and passion to support a robust healthcare industry, biotech sector, and tech scene, and we are proud to welcome Johnson & Johnson Innovation as they join Children’s National,” said Washington, D.C. Mayor Muriel Bowser.

The launch will also boost the collaboration between J&J Innovation - JLABS and the Biomedical Advanced Research Development Authority (BARDA), a component of the Office of the Assistant Secretary for Preparedness and Response in the U.S. Department of Health and Human Services. The partnership will focus on the advancement of medical countermeasures against chemical, biological, radiological and nuclear (CBRN) threats, as well as pandemic influenza and emerging infectious diseases.

“Collaboration is at the heart of our efforts to change the trajectory of health for humanity. We are proud to once again collaborate with Children’s National and BARDA, with the goal of speeding healthcare innovation in the greater Washington, D.C. metro area to the benefit of all,” said William N. Hait, MD, PhD, Global Head, Johnson & Johnson External Innovation, and Research!America Board Member.

In honor of the opening of JLABS @ Washington, D.C., JLABS launched the DC Children’s QuickFire Challenge. Innovators and entrepreneurs with the best ideas on the development and commercialization of pediatric-centered health care innovation will receive up to $150,000 in grant funding in addition to one year of residency at JLABS @ Washington, D.C., and mentoring from the Johnson & Johnson Family Corporation. Applications are open now and through February 7, 2020. Find more information about the application process here.

Upcoming Events

PCORI Advisory Panel on Clinical Trials Spring 2019 Meeting

Wednesday, May 15, 2019

9:00 a.m. - 2:00 p.m.
 

Save the Date: Research!America and partners will host a briefing, which will also be livestreamed, on recent developments related to the Bayh-Dole act. This landmark law has played an instrumental role in solidifying support for federally funded research by creating the framework for “tech transfer.” The briefing will be held June 13, 2019 from 10:00-11:30 at AAAS, 1200 New York Ave NW.

 

Save the Date: Please save the date for June 26, 2019 for a Capitol Hill lunch briefing from noon-1:00pm on rural health research. Find out about new research findings to improve conditions like heart disease in rural communities. 

 

Save the Date for the National Health Research Forum

Thursday, September 5, 2019

The Conrad, Washington, DC

950 New York Avenue NW, Washington, DC 20001

Special Thanks to Our Supporters and Research!America Alliance Members

RESEARCH!AMERICA EXTENDS SPECIAL THANKS TO OUR SUPPORTERS WHO HAVE CONTRIBUTED SINCE THE PUBLICATION OF OUR December NEWSLETTER

 

2019 Advocacy Awards Benefactors
Rosenfeld Heart Foundation
Geoffrey Beene Foundation
Rogers Family Foundation
Gordon and Llura Gund Foundation
Ann Lurie
Whitehead Institute for Biomedical Research
 
2019 Advocacy Awards Sponsors
AdvaMed
American Association for the Advancement of Science
American Association of Colleges of Pharmacy
American Medical Association
Association of Minority Health Professions Schools
Case Western Reserve University School of Medicine
Emergent Biosolutions
Faegre Baker Daniels
Mary Hendrix & Charles Craft
Horizon Pharma
Johnson & Johnson Innovation
Massachusetts Institute of Technology
Merck & Co., Inc.
Morehouse School of Medicine
PCORI
Pfizer Inc.
Rockefeller University
Sanford Burnham Prebys Medical Discovery Institute
Sanford Consortium for Regenerative Medicine
Sanford Health
Sanofi
The George Washington University School of Medicine and Health Sciences
UsAgainstAlzheimer’s
Vertex Pharmaceuticals
Mary Woolley
 
2019 National Health Research Forum
Pfizer Inc.
Sanofi
 
America Speaks, Volume 19
American Medical Association
 
Bringing Life Science Innovations to Market in the Age of Real World Evidence
Audentes Therapeutics
  
CEO Breakfasts
The Kavli Foundation
 
Rare Disease Week
Horizon Pharma
 
Raise the Caps Campaign
American Association for the Advancement of Science
American Cancer Society
American Geophysical Union
American Heart Association
American Institute of Physics
American Physical Society
American Physiological Society
American Society for Microbiology
American Society of Human Genetics
Association for Psychological Science
International and American Association for Dental Research
SPIE
Society for Neuroscience
The Association for Research in Vision and Ophthalmology
The Association of Science-Technology Centers
The Gordon and Llura Gund Foundation
The Optical Society
 
Science Policy Fellowship Program
Howard Hughes Medical Institute

 

SPECIAL THANKS TO RENEWING RESEARCH!AMERICA ALLIANCE MEMBERS
AdvaMed
Aetna, Inc.
Albert Einstein College of Medicine
Alliance for Academic Internal Medicine
Alzheimer’s Association
American Academy of Nursing
American Association for Cancer Research
American Association for the Advancement of Science
American Association of Colleges of Nursing
American College of Clinical Pharmacy Research Institute
American College of Neuropsychopharmacology
American Dental Association Health Policy Research Institute
American Dental Education Association
American Federation for Medical Research
American Foundation for Suicide Prevention
American Institute for Medical and Biological Engineering
American Public Health Association
American Society for Biochemistry and Molecular Biology
American Society for Cell Biology
American Society for Clinical Investigation
American Society for Microbiology
American Society for Nutrition
American Society of Clinical Oncology
American Society of Gene and Cell Therapy
American University
Americans for Medical Progress
Amgen
Arthritis Foundation
Association for Research in Vision and Ophthalmology
Association of Professors of Human and Medical Genetics
Astellas Pharma, Inc.
Beyond Celiac
Biophysical Society
Biotechnology Innovation Organization
Blue Ridge Institute for Medical Research
Boston Children’s Hospital
Cancer Support Community
Celgene Corporation
ChemoCentryx, Inc.
Clinical Research Forum
Cold Spring Harbor Laboratory
Dana-Farber Cancer Institute
Duke University Medical Center
Duke University School of Nursing
EB Research Partnership
Emory University Rollins School of Public Health
EveryLife Foundation for Rare Diseases
Federation of American Societies for Experimental Biology
Feinberg School of Medicine at Northwestern University
Fight Colorectal Cancer
Florida International University Herbert Wertheim College of Medicine
Foundation for the National Institutes of Health
Fred Hutchinson Cancer Research Center
Friends of Cancer Research
Gates Center for Regenerative Medicine
Genentech
Genetics Society of America
George Washington University School of Medicine and Health Sciences
Gilead Sciences
Harvard School of Dental Medicine
Harvard T.H. Chan School of Public Health
Horizon Pharma
Howard Hughes Medical Institute
Huntington Medical Research Institutes
Hydrocephalus Association
Infectious Diseases Society of America
International Biomedical Research Alliance
Johns Hopkins Medicine
Johnson & Johnson
Joseph H. Kanter Family Foundation
Lupus and Allied Diseases Association
Mallinckrodt Pharmaceuticals
Medical University of South Carolina
Memorial Sloan-Kettering Cancer Center
Merck & Co., Inc.
Milken Institute School of Public Health at George Washington University
Morehouse School of Medicine
Multiple Sclerosis Society
National Disease Research Interchange
National Foundation for Infectious Diseases
National Medical Association
National Organization for Rare Disorders
National Osteoporosis Foundation
New York Stem Cell Foundation
New York University
NewYork-Presbyterian Hospital
North American Vascular Biology Organization
North Carolina Association for Biomedical Research
Northeast Ohio Medical University
Oregon Health & Science University
Orthopaedic Research Society
PCORI
Parent Project Muscular Dystrophy
Partners HealthCare System
Pfizer, Inc.
Roivant Sciences
Rush University Medical Center
Rutgers Biomedical and Health Sciences
SUNY Downstate Medical Center
Sjogren’s Syndrome Foundation
Smith-Kettlewell Eye Research Institute
Society for Advancement of Violence and Injury Research (SAVIR)
Society for Prevention Research
Spina Bifida Association
Stanford University School of Medicine
The American Society of Hematology
The American Society of Tropical Medicine & Hygiene
The Brain and Behavior Research Foundation
The Leukemia and Lymphoma Society
The Mayo Clinic
The National Alliance to Advance Adolescent Health
The Rockefeller University
The Society for Healthcare Epidemiology in America
The University of Chicago Pritzker School of Medicine
The University of Michigan
The University of Texas Health Science Center at San Antonio
UC San Diego School of Medicine
University at Buffalo School of Medicine and Biomedical Sciences
University of California, San Francisco
University of Maryland School of Dentistry
University of Miami School of Nursing and Health Sciences
University of North Carolina School of Medicine
University of Texas Health Science Center at Houston
UsAgainstAlzheimer’s
Vertex
Virginia Tech
Washington University Center for Health Economics and Policy
Washington University School of Medicine in St. Louis
WomenHeart: The National Coalition for Women with Heart Disease

Regular Features

President's Letter

It is spring and the height of the annual appropriations season in the Congress. We’re “all in” to Raise the Caps and urge all stakeholders in medical and health research to take part as well! For those who haven’t been following the details of the budget and appropriations process, the bottom line is that legislation passed in 2011 is continuing to handcuff the Congress. If enough constituents speak up, medical and health research can be put to work to speed progress and deliver on its promise of hope. (See elsewhere in this newsletter for details on how to get involved, in just a few minutes or longer, by spreading the word to friends, family, and colleagues who care about the future of health.)

Advocacy works!  It’s been demonstrated over and over again that when the public speaks out, elected officials listen.  President Lincoln said it well:  “Public sentiment is everything; With public sentiment, nothing can fail; without it nothing can succeed.” Amazing advocates like those we saluted last March inspire us all to take a moment to make a difference. Maybe we will be saluting someone who inspires you next year.  Research!America’s award nominations are open. Let us hear from you!  

Media Matters

Vaccines

Research!America’s public opinion survey data regarding vaccines was mentioned in a variety of media stories, including in The Pittsburgh Post-Gazette, the UK Daily Mail, and MEA WorldWide.

James Madara was quoted in, “Key doctors group presses tech to crack down on anti-vaccine misinformation,” in The Hill, March 13, 2019.

 

Advocacy Awards

Denny Sanford, recipient of the Gordon and Llura Gund Leadership Award, was profiled by Fox Power Player of the Week and featured on Fox News Sunday while he was in D.C. to be honored at the Advocacy Awards dinner on March 13, 2019.

 

 

 

Tobacco Use

Nancy Brown was quote in an article in Bloomberg about the FDA crackdown on e-cigarettes, March 13, 2019.

Bill Hait was quoted in an article in BU Today on April 23 about stopping lung cancer before it starts.

Alan Leshner was quoted in a Healthday article about lack of access to opioid addiction treatments, March 20, 2019.

 

Budget

Ellie Dehoney was quoted in a Bloomberg Law story about the president’s proposed budget cuts to AHRQ on March 1, 2019.

Leadership

Lucinda Maine was mentioned and quoted in a BusinessWire article about the Interprofessional Leadership Development Program (ILDP) convening at the Association of American Medical Colleges (AAMC) Learning Center in Washington, D.C. from February 6-8, 2019.

Jay Gershen co-authored an op-ed in the Akron-Beacon Journal about infrastructure and transportation needs in Ohio, March 27, 2019.

Nancy Brown was quoted in a Cardiovascular Business article about AHA’s and Verily’s initiative to promote Research Goes Red, an attempt to engage more women in cardiovascular research, on February 26, 2019.

Victor Dzau was quoted in Scientific American, “Scientists Call for a Moratorium on Editing Inherited Genes,” on March 13, 2019.

From Washington

Johnson & Johnson Innovation Announces Collaboration with National Academy of Medicine to Help People Live Longer, Healthier Lives

Johnson & Johnson Innovation LLC announced the signing of a sponsorship agreement on April 15, 2019, with the National Academy of Medicine (NAM) to be the principal corporate partner of the Healthy Longevity Catalyst Awards in the United States. Part of the Healthy Longevity Global Grand Challenge founded by the NAM, the Catalyst Awards are a global prize competition to launch later this year, designed to stimulate innovation to transform the field of healthy longevity. The program will culminate in one or more Healthy Longevity Grand Prizes for major breakthroughs in increasing human healthspan.

"At Johnson & Johnson Innovation, we're working to change the trajectory of health for humanity. In addition to developing effective treatments, our 'World Without Disease' vision is to increasingly eliminate diseases through prevention, disease interception in its earliest forms and cures," said William N. Hait, MD, PhD, Global Head, Johnson & Johnson External Innovation, Johnson & Johnson Innovation LLC and Research!America board member.

"Johnson & Johnson Innovation's commitment to a 'World Without Disease' aligns perfectly with the NAM's goal to extend the human healthspan globally and equitably, and I am grateful for their partnership on this important initiative,” said Victor Dzau, MD, President, National Academy of Medicine and Research!America board member. “With its deep knowledge of the entire spectrum of human health, Johnson & Johnson Innovation is uniquely positioned to help advance the most promising innovations. I am confident that, by joining forces, we can accelerate breakthrough innovations that will transform the field and change the way we think about aging forever."

Both Hait and Dzau mentioned that the idea for this collaboration had begun as a conversation at a Research!America meeting. “A great idea can come from anywhere,” Hait said, “and we are proud to partner with the NAM to catalyze new cross-disciplinary ideas and innovation that we believe will ultimately lead to novel solutions for aging in freedom from debilitating disease."

For more information, visit https://nam.edu/initiatives/grand-challenge-healthy-longevity/.

State of Cancer Care in 2019

In April, the American Society or Clinical Oncology (ASCO) hosted their 2nd annual State of Cancer Care in America event, focusing on closing the gap in rural health care.  In recent years we have seen huge strides in cancer care and treatment, with [1]cancer death rates down 25% since the early 1990s. However these gains are not universally realized throughout the United States.  As Monica M. Bertagnolli, MD, President of ASCO stated “Our zip code, where we live, is a factor that influences whether we get cancer, whether we survive it and if we receive treatment that is successful.”

ASCO outlined four key challenges in in addressing the inequality in rural cancer care. Limited oncology workforce impacts the availability of care, disproportionately fewer oncologists and other cancer care providers are available in rural areas[2].  There are also geographic barriers to cancer treatment and follow up care, patients often travel long distances[3].  It is harder for patients in rural areas to take part in clinical trials, which often offer the best and latest treatment options[4], due to a lack of clinical trial infrastructure.  Finally, insurance obstacles are often complex for rural patients to negotiate.  Patients are less likely to have employer-provided health insurance and may not have access to Medicaid or comprehensive individual coverage[5].

During the briefing, ASCO announced their new task for to address the gap in rural cancer care. Comprised of ASCO Board and committee members, the group identified four critical areas to focus on supporting rural oncologists. Firstly, improving education and training to equip oncologists and other cancer care team members to provide specialized care.  Secondly, improving the understanding of the rural workforce needs and expanding access to care providers.  Thirdly, investing in tele-oncology by increasing broadband access, reimbursement policies and other solutions for remote care.  Finally, more research is necessary to develop understanding of the magnitude of differences between rural and urban environments, and increased access to clinical trials.

Two panel discussions addressed these issues, focusing first on the landscape of rural cancer care, and second on pioneering solutions to improve outcomes.  Panelists included:

  • Leslie Byatt, CPhT, CCRC, Clinical Research Manager, New Mexico Cancer Care Alliance, New Mexico Minority/Underserved NCORP Grant Administrator
  • Hedvig Hricak, MD, PhD, Chair, Department of Radiology, Carroll and Milton Petrie Chair, Memorial Sloan Kettering Cancer Center
  • Alan Morgan, MPA, Chief Executive Officer, National Rural Health Association
 

[1] Cancer Facts and Figures: Death Rate Down 25% Since 1991; American Cancer Society, Jan. 5, 2017

[2] Kirkwood MK, Hanley A, Bruinooge SS, et al: The state of oncology practice in America, 2018: Results of the ASCO practice census survey.  J. Oncol Pract 14(7): e412-e240,2018.

[3] (Onega T, Duell EJ, Shi X, et al.  Geographic access to cancer care in the U.S. Cancer. 2008;112:909-18.)

[4] (Fenton L, Rigney M, Herbst RS. Clinical trial awareness, attitudes and participation among patients with cancer and oncologists.  Commun Oncol. 2009;6:207-13.)

Accelerating Global Elimination of Cervical Cancer

In 2030, it is estimated that nearly 443,000 people will die from cervical cancer. However, cervical cancers, nearly all of which are caused by HPV, can be eliminated globally with vaccination. Why hasn’t this disease been eliminated yet?

To answer this question, AvaMedDx and American Cancer Society Cancer Action Network (ACS CAN) hosted a Congressional Briefing entitled “Accelerating Global Elimination of Cervical Cancer: A Call to Action” on February 14, 2019.

The event featured a panel that included Ambassador Sally Cowal, Senior Vice President of Global Cancer Control for the American Cancer Society, who spoke on how cervical cancer is affecting women globally. She reported that cervical cancer is the leading cause of cancer death for women in 43 countries, and disproportionately affects women in low and middle income countries, as well as women living in low and middle income areas of the United States. The majority of these deaths occur in women in their 30s and 40s, which can have dramatic community and economic impacts. She discussed the recently launched global campaign set to improve the percentage of teenagers who have received the full HPV vaccine treatment stressing that the vaccine is safe and effective with vaccine services in place to leverage.

The panel also included Nicolas Wentzensen, MD, PhD, Deputy Branch Chief and Senior Investigator for the National Cancer Institute, who presented on how the NIH is using the Cancer Moonshoot funding to treat and prevent cervical cancer. He noted that different areas have specific needs that must be addressed in order to be effective. Therefore, the focus must be on improving the efficiency of risk screening and management in areas with a high level of resources, as well as developing single visit screen-and-treat programs in low resource areas, which minimize the time to treatment as well as the burden of seeking care.

Thierry Bernard, MD, PhD, Senior Vice President of Molecular Diagnostics Business Area for QIAGEN, presented the steps QIAGEN has taken to address the lack of routine testing in developing countries while remaining culturally sensitive and adapting to low resource testing centers. In coordination with PATH and with funding by the Bill and Melinda Gates Foundation, QIAGEN developed careHPV, a test with minimal requirements for operating conditions, requiring no scientific training to conduct. He noted that just because this test was created with developing counties in mind, in no way is it a low quality test, as a lack of testing is a worldwide issue.

John Varallo, MD, MPH, FACOG, Global Director for Safe Surgery and Technical Advisor for Cervical Cancer Prevention for Jhpiego, noted the importance of linking screening and treatment, as well as the ethical obligations medical centers have to provide these services. He stated that Jhpiego has been developing a self-collection test, which can be done at home. This will reduce the number of physician visits, minimize patient discomfort, and has had remarkable participation rates to date.

William R. Steiger, Chief of Staff for the U.S. Agency for International Development noted that although USAID has been devoting their own funding towards programs controlling cervical cancer, there is a mismatch between available funding and the current level of need. He highlighted reasons why an inclusive, globally focused cervical cancer control program is necessary, including how it can empower women to take control of their health. Looking toward the future, he noted that we all can learn more about cervical cancer and discuss our findings with peers. To create the most efficient system possible we must allow for flexibility in the budget to foster integrative programs and continue to conduct research.

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Robert Shalett
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The capabilities are enormous, a little bit of research can pay off quite a bit in the long run.
Paul D’ Addario, retinitis pigmentosa patient