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: Summer 2019

From Research!America

Research!America Briefing Addresses Rural Health Disparities, Heart Disease and Patient-Centered Solutions

On Wednesday, June 26, Research!America co-hosted a briefing on Capitol Hill with the Patient-Centered Research Institute (PCORI), National Rural Health Association (NRHA), and American Heart Association (AHA) entitled “Improvements to Rural Health Care Through Patient-Centered Research.” The panelists included Debra K. Moser, PhD (University of Kentucky), Maggie Elehwany, JD (NRHA), and William Borden, MD (AHA), and the discussion was moderated by Lisa Simpson (AcademyHealth). 

Improvements to Rural Health through Patient-Centered Research

The Honorable Senator Chris Van Hollen also spoke, highlighting PCORI’s role in promoting patient engagement in research. As Senator Van Hollen asked, “what research works best for whom? The work of PCORI is helping to generate this evidence for patients and doctors.”

The panelists emphasized that patient engagement is crucial in rural communities that present unique health care challenges such as lack of access to providers, higher rates of tobacco use and obesity, and transportation barriers.

Cardiovascular disease (CVD) is also of major concern in rural communities. CVD is still the leading cause of death in the U.S., and CVD death rates in rural areas are greater than in urban settings. Dr. Borden reported that though incidence of the disease has declined, the rate of that decline has recently decreased, which is concerning.

Dr. Moser investigated the intersection of these issues in a PCORI-funded study based in rural Appalachian Kentucky. Her team researched the effects of lifestyle changes on cardiovascular (CV) risk factors, such as blood pressure and tobacco use. Dr. Moser compared two treatment groups - one set of patients only saw doctors, and the other saw doctors while participating in small group classes taught by trained community health workers. Dr. Moser’s team found that those who attended classes had greater decreases in CV risk factors. Even more encouraging was the duration of effects - the positive changes persisted through twelve months. 

Addressing gaps in health, articulated Dr. Borden, requires building systems of care such as implementing a telehealth option and universal health care coverage. However, as Dr. Borden and fellow panelists agreed, engaging communities in research studies is also important because it increases people’s ownership of the results and their own health status.

For more information, photos, and videos visit this page.

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President's Letter

We’d all like to think that research for health is moving steadily toward the goal of finding solutions to what ails us.  Unfortunately, support for research isn’t moving as steadily as patients need and we all expect.  Federal funding increases to NIH, NSF, CDC, FDA and AHRQ that will help turbo-charge exciting new discovery and development is popular on a bipartisan basis, but stymied by the inability of the Congress and Administration to come to an agreement on overall budget levels.  We could see cuts by the first of October – dramatic cuts, as much as 10%.  There is so much at stake, and so much urgency for stakeholders.  Please take a few minutes to join the rest of us in doing so.

It isn’t only funding that is slowing science, it’s also policy change.  The Trump Administration recently announced several such changes that force fetal tissue research to the sidelines, despite its crucial role in combating such health threats as polio, HIV/AIDS, degenerative and congenital conditions, and more.  Urge your elected officials to push back.  Lives depend on advances that might now never see the light of day.

Some good news: legislation to reauthorize the Patient-Centered Outcomes Institute (PCORI) has been introduced in both Houses of Congress, as have bills to repeal the excise tax on medical device research and development.  PCORI is forging new ground by turning the goal of patient-informed, patient-focused research into a reality, and repealing the twice suspended excise tax is a common sense strategy (diverting investment away from the development of new diagnostics and other medical technologies simply does not serve the public interest).

Whether we are calling for action or applauding it, we value your commitment to faster medical and public health progress and your partnership!

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Federal Policy Update

In recent months, Congressional leadership and the Administration have been engaging in negotiations to secure a budget deal to raise the caps on defense and non-defense spending.  If a deal is not reached, there are several possible scenarios, ranging from a government shutdown, to flat-funding under a temporary or year-long continuing resolution (CR), to more than $100 billion in cuts, either imposed across-the-board or allocated by Congress across federal agencies and programs.  The prospects for a resolution that enables increased funding for science funding remain uncertain.  Research!America and our partners are continuing to work on the #RaiseTheCaps advocacy campaign encouraging Congress and the Administration to forge a bipartisan agreement that lifts the budget caps.

While final funding levels hinge on a caps deal, the House has moved forward with Fiscal Year 2020 appropriations legislation. As of June 26, 2019, the House has passed 10 of the 12 appropriations bills, including Labor, Health and Human Services (Labor/HHS), which includes a $2 billion increase for the National Institutes of Health (NIH) an almost $1 billion increase for the Centers for Disease Control and Prevention (CDC), and a $20.2 million increase for the Agency for Healthcare Research and Quality (AHRQ); the Commerce, Justice, Science (CJS) bill, which includes an increase of $540 million for the National Science Foundation (NSF); and the Agriculture and FDA legislation, which provides an increase of $180 million for the Food and Drug Administration (FDA).  The Senate Appropriations Committee has yet to start drafting its Fiscal Year 2020 appropriations bills. 

Another advocacy issue Research!America is actively working on is the repeal of the medical device excise tax.  The medical device tax will go back into effect in January 2020 if Congress does not act.  Bipartisan legislation has been introduced in both the House and Senate to repeal the tax. 

The Research!America alliance is working on a host of other science and innovation-relevant issues, including working to prevent actions that undermine life-saving fetal tissue research; helping ensure the Patient-Centered Outcomes Research Institute (PCORI) can continue its groundbreaking work to foster new, patient-centric research models, raising awareness regarding the importance of the landmark Bayh-Dole Act; and engaging in efforts to promote a responsible path forward as policymakers investigate illegal diversion of U.S. intellectual property. 

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Welcoming New Faces at Research!America

Cassie Ramos joined as a Science Policy Fellow supported by the Howard Hughes Medical Institute. Cassie grew up in Sacramento, CA and completed her PhD in Biological Sciences at City of Hope. Cassie’s dissertation research studied the link between obesity and breast cancer, and her findings showed that mitochondria in cancer cells play a major role in tumor progression during pre-diabetes and hyperinsulinemia. While studying cancer and health disparities, Cassie realized that policies surround health research and patient access to resources, and her long-term goal is to work in policy analysis and advocacy. She also has a BS in Biochemistry and Molecular Biology from University of California, Davis and a MS in Biological Sciences from San José State University. In her spare time Cassie enjoys participating in science outreach, cooking and trying new recipes, and spending time outdoors.

Communications Intern Gwendolyn Bogard is a senior Chemistry major in the Honors College at Southern Oregon University. Interested in the intersection of communication and science, Gwendolyn spent last summer interning at the Monteverde Butterfly Gardens in Costa Rica, leading tours and educating tourists on Costa Rican insect life. Gwendolyn hopes to pursue a career in science communication, potentially working in the nonprofit sector or for a national science organization. The Communications internship is supported by the Burroughs Wellcome Fund.

Rebecca Mandt joined as a Science Policy Intern, also supported by the Burroughs Wellcome Fund. Rebecca is a PhD candidate in the Biological Sciences Program at the Harvard T.H. Chan School of Public Health, in the lab of Dr. Dyann Wirth. Her research focuses on the biology of the parasites that cause malaria, in particular how they evolve resistance to new drugs that are in clinical and pre-clinical development. Rebecca is originally from Minnesota (you betcha!). She earned her bachelor’s degree in biology from Grinnell College. In addition to her academic pursuits, Rebecca is involved in a variety of science education and outreach activities, and is passionate about increasing diversity and representation in STEM fields. In her spare time, she enjoys swing and blues dancing, and taking care of other people’s dogs until she can get one of her own. She is excited to be part of the Research!America team this summer, and to learn about important policy issues that impact her own scientific community.

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ICYMI: Scientific Progress and the Bayh-Dole Act

Did you miss the briefing, Scientific Progress and the Bayh-Dole Act? The video is now available.

Photos are also available:

Scientific Progress and the Bayh-Dole Act: Exploring the role and significance of a landmark law

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Action Alert: Raise the Caps!

You've heard from us before about the importance of raising the budget caps to protect scientific research that leads to innovation and cures. Negotiations around a deal to raise the caps are on shaky ground…to say the least. If we turn down the volume now, it will be at the expense of scientific progress…that’s too high a price. Are you willing to take a moment to tweet your continued support?

Click here to tweet (and you can edit the tweet as you like!):

Without an agreement with the Administration, instead of progress, we will have cuts. Some news reports indicate that the back-up plan to a budget deal is a year-long continuing resolution (CR). It’s important to remember that a CR does not mean flat funding (which would be bad enough), it means budget cuts. The only path to preventing significant cuts to science is a budget deal that raises the caps. Your leaders need to hear from you! Take action today!

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From Washington

Wellcome Trust Releases Science Attitudes Study

On June 19, 2019, the Wellcome Trust released the first global study of public attitudes toward science and health, which surveyed 140,000 people in over 140 countries. The report, entitled the Wellcome Global Monitor 2018, shows that 72% of people in the world have a high or medium level of trust in scientists. Trust has far-reaching consequences, and according to Jeremy Farrar, Director of Wellcome, “No matter how great your idea, how exciting your new treatment, or how robust your science, it must be accepted by the people who stand to benefit from it.”

Those who believe that science benefits most people in society are more likely to have high trust in science. The level of inequality in a country also correlates with trust in scientists – the more inequality, the less trust in scientists. As such, citizens of developing countries have lower trust in scientists. Residents of the “Big Five” – China, U.S., Japan, Russia, and E.U. – have relatively high trust in scientists, and within that group, the U.S. ranks high – 25% high trust, 56% medium trust.

However, these national trends are reversed for trust in vaccines. Highly industrialized countries have lower trust in the safety and effectiveness of vaccines while developing countries have higher trust. Skepticism was highest in France, where a third of citizens believe that vaccines are unsafe. However, 2018 study by Research!America found that 92% of Americans thought that vaccines were very or somewhat important to the health of our society. The Wellcome survey found that globally, 92% of parents had vaccinated their children, but vaccination rates must reach 95% to achieve the herd immunity necessary to ensure universal protection.

Another notable finding in the Wellcome survey was a gender gap in confidence in scientific knowledge. Men were 11% more likely to claim that they knew a lot or some about science, even at comparable education levels. Men were also more likely to seek out information about science. However, the gap disappeared in one area – women were just as likely to research health and medical information.

Overall, the survey indicated that people were more willing to engage with health information than ‘pure’ science. Globally, 72% of people reported high or medium trust in scientists, but 84% said they had a lot or some trust in doctors and nurses. Similarly, a 2017 Research!America survey found that 79.3% of Americans viewed healthcare professionals as a very or somewhat trustworthy spokesperson for science.

In order to increase public engagement and trust in science, it is crucial that people feel they can participate. Mae Jemison – U.S. engineer, physician, and NASA astronaut – summed it up well at the Wellcome survey launch event on June 19, asking, “Are we making [the public] feel, and be, included?”

Research!America President and CEO Mary Woolley joined a panel at Aspen Health on June 20 to discuss the report. Imran Khan, Head of Public Engagement for Wellcome Trust, introduced the report’s findings. Woolley reviewed Research!America’s findings on vaccines and also pointed out some of the potential causes, such as “declining trust and confidence in our healthcare system, and an overall decline in respect for our elite institutions.” The full report, with data sets and graphs, is available on the Wellcome website.

 

 

 

 

 

 

 

 

 

 

 

Mary Woolley speaks on a panel at Aspen Ideas Health. Photo: Property of the Aspen Institute / Photo Credit: Ian Wagreich. Used with permission.

 
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Measles in the United States: To counter a once-defeated foe, on-the-ground action is needed

As of June 13, 2019, the United States has seen more than 1,000 reported cases of measles — the highest number in 27 years. The largest of these outbreaks occurred in New York City. At the Washington Post Live event “Transformers: Health” on June 11, experts discussed how best to address this growing crisis in a panel entitled, “Innovative Solutions for a Public Health Emergency.” The discussion, moderated by health reporter Lena Sun, featured Oxiris Barbot, MD, Health Commissioner for the City of New York; Nancy Messonnier, MD, Acting Director of the CDC’s Center for Preparedness and Response; and Peter Hotez, MD, Professor and Dean at Baylor College of Medicine.

Dr. Messonnier explained that although vaccine coverage in the United States is high, measles cases still occur when unvaccinated individuals travel abroad and become infected. If returning to communities with high vaccine coverage, the virus will not spread. However, this year, measles was brought into communities with low vaccination rates, which were then susceptible to an outbreak. Dr. Barbot described how this scenario played out in New York City. Although the overall public school vaccination rate is 99%, measles was introduced into a community with “isolated pockets” of lower vaccine coverage, creating “the perfect storm”. Dr. Hotez added that given the increasing numbers of people refusing to get vaccinated, the current outbreaks were “predicted and predictable.”

A common thread throughout the discussion was the importance of local engagement within affected communities. Dr. Barbot emphasized that she relies heavily on community partners for help in promoting vaccination. Highlighting the continued importance of “good, old-fashioned public health”, she described successful efforts in New York City to work with the Jewish Women’s Medical Association and to offer free in-home vaccinations. Dr. Messonnier reiterated this message, noting that parents are most likely to listen to their health care provider or other trusted members of their own community. She highlighted the importance of day-to-day conversations, saying that national visibility is great, but “in the end, it really is about local action”. She noted that the long-term goal is not just to stop the measles outbreaks, but to re-establish trust in the entire U.S. immunization program.

Dr. Messonnier, who is both a leader in public health and a mother, drove the point home: “I have kids myself, and they are vaccinated.”

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Regular Features

Media Matters
AI

E. Albert Reece, MD, PhD, MBA was mentioned with the launch of an innovative project to benefit patients in the hospital setting. See HealthIT Analytics (6/11/19 - Machine Learning, Risk Scores Help Predict Hospital Readmissions); and Health Care Business daily news (6/12/19 - New algorithm better predictor of readmission following discharge, says study)

 

 

Accolades

Mary J.C. Hendrix, PhD, was named by the Girl Scouts of America as a 2019 “Woman of Distinction”.  She was noted in The Journal-Martinsburg, WV (6/12/19 - Girl Scouts announce 2019 Women of Distinction) and in the Herald-Mail Media (6/13/19 - Girl Scouts announced 2019 Women of Distinction).

 

 

 

Climate

Rush Holt, PhD was interviewed by several media outlets on the administration’s actions on climate change. See Q13 Seattle (6/13/19 – Emails: Trump official consulting climate-change rejecters); and Westport News (6/14/19 - Emails: Trump official pressed NASA on climate science)

 

 

CRISPR Controversy

Victor Dzau, MD was quoted in several publications on the ethics behind CRISPR babies. This includes STAT (6/24/19 – “Alarmed by new ‘CRISPR babies’ plan, top science figures say they’re powerless to stop it”); BioSpace (6/24/19 - "This is crazy!"—Top Scientists Condemn Russian's Plan for CRISPR Babies”); Becker’s Hospital Review (6/26/19 – Scientific leaders condemn Russian scientist's plan to produce more 'CRISPR babies')

Fetal Tissue Research

Ellie Dehoney was quoted by NBC News on why fetal tissue is important to researchers and what the administration’s new regulations mean for scientists and patients. (6/9/19 - What is fetal tissue research? And why is it important to medicine?)

"There's a misconception that fetal tissue research is the wild, Wild West," said Ellie Dehoney, vice president of policy and advocacy for Research!America, a nonprofit group that advocates for scientific research.

 

Healthcare Costs

Georges Benjamin, MD commented on a report focusing on the cost burden of cancer treatment and management. See Keep the Faith (6/6/19 - Medicaid expansion tied to ‘timely’ treatment for black cancer patients, study says); and CBS Baltimore (6/7/19 - The Cost Of Cancer: 25 Percent Of Survivors Face Financial Hardship, Report Finds)

 

 

 

Science Communications

Mary Woolley and Jamie Vernon co-wrote a piece in American Scientist encouraging scientists to speak up about their work. (6/20/19 - Visibility May Be the Key to Increasing Support for Science)

 

 

 

 

 

 

 

Vaccines

Dr. Peter Hotez, who was honored with the Research!America Advocacy Award for Sustained National Leadership in 2018, was featured in the New York Times opinion piece, "When Defending Vaccines Gets Ugly," on June 2, 2019.

 

Rare Diseases

John Crowley, who recieved the 2013 Gordon and Llura Gund Award, and his daughter Megan, who inspired him to join the biotech sector, were featured in a Wall Street Journal article highlighting Megan's progress in college and overcoming the challenges of Pompe disease.

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Member Spotlight: Pfizer

Purpose: Pfizer’s purpose is breakthroughs that change patients' lives.

At its heart, Pfizer is a science-based company that is working to deliver on scientific breakthroughs by translating a deep understanding of biology into potentially transformative therapies in areas where it has been thought there is no hope for patients.

Pfizer is focused on preventing disease, driving remission and ultimately finding cures. Pfizer is harnessing its scientific capabilities, talent and collaborations to advance new modalities with the potential of addressing unmet patient needs in several therapeutic areas: Oncology, Rare Disease, Inflammation and Immunology, Internal Medicine, and Vaccines.

Pfizer is one of the largest investors in R&D with a 2018 R&D investment of $8 billion. Pfizer’s talented scientists and clinicians have deep scientific insights and expertise that build on Pfizer’s strengths, such as its world-class small molecule platform, end-to-end biologics and vaccines capabilities.

Across Pfizer’s areas of research, it is investigating vaccines for deadly infections such as C. difficile, Respiratory Syncytial Virus, Pneumococcal Pneumonia, and Group B Strep. Pfizer is also advancing the next wave of innovation in cancer research with a portfolio of targeted therapies and immuno-oncology (IO), looking at both monotherapies and combinations. In immunoinflammatory diseases, Pfizer is investigating potential new therapies for atopic dermatitis, alopecia areata, IBD, vitiligo, and Crohn’s disease, with an array of kinase inhibitors. It is seizing opportunities in gene therapy to find potential cures for diseases like hemophilia A and B, and Duchenne muscular dystrophy. In Internal Medicine, Pfizer is advancing potential options for patients living with Nonalcoholic Steatohepatitis, or NASH.

To ensure that it is advancing the best science, Pfizer’s R&D organization is working on early discovery to development, while also exploring external opportunities. Pfizer’s widespread collaborations span the entire ecosystem – partnering with academia, medical centers, government, patients, venture capital and others – to help shape the health innovation environment. Its core R&D sites are in Cambridge, MA, Groton, CT, La Jolla, CA, St. Louis, MO and the North Carolina Research Triangle, where Pfizer works closely with collaborators clustered in these hubs of scientific excellence.

“Pfizer is actively supporting the development of an emerging, highly-networked ecosystem that will catalyze tomorrow’s scientific and medical innovations. In this journey, we hope to advance unique models of collaboration with creativity, flexibility and openness to deliver innovation quickly, regardless of where the talent and resources reside,” says Mikael Dolsten, MD, PhD, Chief Scientific Officer and President of Worldwide Research, Development and Medical at Pfizer.

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Upcoming Events Summer 2019

Tear Film & Ocular Surface Society’s Dry Eye Workshop II

Congressional Briefing and Screening

Ongoing Impact of TFOS DEWS II™ on Dry Eye Clinical Practice & Research 

July 10, 2019

Learn more here.

 

Coalition for Life Sciences

Human Genome to Precision Medicine

July 15, 2019

 

 

Save the Date for the National Health Research Forum

Thursday, September 5, 2019

The Conrad, Washington, D.C.

950 New York Avenue NW, Washington, DC 20001

 

Rally for Medical Research

Wednesday, September 18 and Thursday, September 19, 2019

Learn more and register!

 

PCORI Annual Meeting

Wednesday, September 18 through Friday, September 20, 2019

Washington Marriott Wardman Park

Find out more and register now.

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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 Spring NEWSLETTER
2019 Advocacy Awards
American Association for Cancer Research
Celgene
University of California, San Diego
University of California, San Francisco
Special Thanks to Our Renewing Members
Academy of Radiology Research/Coalition for Imaging and Bioegineering Research
Akron Children’s Hospital
Alnylam Pharmaceuticals
American College of Surgeons
American Medical Association
American Medical Informatics Association
American Psychiatric Association
American Society of Human Genetics
Association for Psychological Science
Association of American Cancer Institutes
Association of American Physicians
Broad Institute
Carnegie Mellon University
Children’s Research Institute at Children’s National Medical Center
Cleveland Clinic Lerner Research Institute
Colgate Palmolive Company
Emory University School of Medicine
H. Lee Moffitt Cancer Center & Research Institute
La Jolla Institute for Allergy & Immunology
Medical Device Manufacturers Association
Myasthenia Gravis Foundation of America
National Alopecia Areata Foundation
National Eating Disorders Association
National Foundation to End Child Abuse and Neglect
Nebraska Coalition for Lifesaving Cures
New Jersey Association for Biomedical Research
RAND Corporation
Regenerative Medicine Foundation
Regeneron
Sanofi
Sigma Xi, The Scientific Research Honor Society
Society for Immunotherapy of Cancer
South Alabama Medical Science Foundation
The ALS Association
The Gladstone Institutes
The University of Nevada, Las Vegas School of Dentistry
The University of Wisconsin School of Medicine and Public Health
University of Delaware
University of North Carolina Gillings School of Global Public Health
Vanderbilt University Medical Center
 
As of June 26, 2019

 

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Without continued support for health research, many of the most promising young scientists, their ideas and a myriad of potentially life-changing scientific breakthroughs will vanish into oblivion.
Paul Marinec, PhD; University of California San Francisco