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

Experts Discuss Post-Election Outlook for Research and Medical Progress

(L to R) Lori Stokes; The Hon. Louis Sullivan, M.D.; Rush Holt, Ph.D.; The Hon. John Edward Porter; The Hon. Mike CastleThe national priorities of President-elect Donald Trump will likely have a direct bearing on the future of the research enterprise. Will major initiatives such as the cancer moonshot continue to advance? Will the new Administration support tax policies that encourage research in the private sector? Research!America convened an esteemed panel of policymakers and scientists for the 2016 Post-Election Briefing on November 15 to discuss expectations for science and medical progress with a new president and the next Congress. The briefing was hosted by the American Association for the Advancement of Science and supported in part by Zogby Analytics. Lori Stokes, co-anchor, WABC-TV Eyewitness News and daughter of the late Ohio Congressman Louis Stokes, moderated the panel.

John Zogby, founder and senior partner of John Zogby Strategies and internationally respected pollster, said it’s too soon to tell what a Trump Administration will mean for medical and health research but individuals agree that research is vital to our nation. President and CEO of Research!America Mary Woolley said that in spite of the political divides in this past election, there’s one thing that Americans all agree on, “they want research, science and innovation to succeed rather than fail, and the sooner the better.”

A major challenge faced by the President-elect will be attracting top talent to federal science agencies, said The Hon. Louis Sullivan, M.D., former Secretary of Health and Human Services , especially given how interdependent agencies are—what happens in one department can affect many others.

Rush Holt, Ph.D., CEO, American Association for the Advancement of Science, said that in thinking about the new Administration, there are more questions than answers, and the answers are dependent on more than just funding. “Will government-funded researchers be free to speak up? Will the Administration enthusiastically take part in international programs to advance science and research? Will there be a reverence for evidence in all policymaking through the Administration?” Holt asked.

The Cancer Moonshot’s future is uncertain under the new Administration, said The Honorable Mike Castle, Research!America Vice Chair, former U.S. Representative, adding that he hopes the President-elect will engage Vice President Biden and bring others into the initiative as well to continue the momentum.”

The Honorable John Edward Porter, Research!America Board Chair, former U.S. Representative, predicted that funding for the National Institutes of Health will fare well in a Republican-controlled Congress. Many champions for medical research have been re-elected, and are on the congressional committees that handle appropriations for a number of science agencies, including NIH.

The panelists emphasized that it’s important for advocates to speak out now more than ever. Porter urged scientists to meet with their representatives “and tell them what you do and why it makes a difference.” Often policymakers don’t have that information, he said, and if they knew it, they’d act on it.

Click here for a video of the event, and visit our Flickr album for more photos.  

Campaign for Cures Wrap Up

President-elect Donald Trump’s views on science in a ScienceDebate.org questionnaire, a blog focused on research for health issues related to the election, events in key states, public opinion surveys and more than 500 quotes from candidates about research and innovation are among the highlights of the Campaign for Cures: Vote for Medical Progress. 

The campaign, which kicked off September 2015, focused on elevating medical and health research into the national conversation during the election season through on-the-ground events, extensive media outreach, social media and grassroots engagement and digital advertising. The initiative’s website also featured an interactive map with hundreds of quotes on medical progress from candidates across the political spectrum running for national office. Former USA Today senior editor and health reporter Janice Lloyd managed the Campaign for Cures blog and partners provided compelling videos from scientists, blog posts and shared social media messages to generate buzz about the initiative throughout the election cycle.

A majority of Americans (78%) say it is important for the next President and Congress to assign a high priority to putting health research and innovation to work to assure continued medical progress, according to a survey commissioned by Research!America. A strong majority (84%) also agree that it is important that the U.S. remains the global leader in bringing new medicines to patients.

Visit www.campaignforcures.org for more information.

Federal Policy Update

It is a near certainty that Congress will pass a Continuing Resolution (CR) that flat-funds government until March or maybe April, 2017. The current CR expires December 9, 2016. Research!America sponsored a letter, signed by more than 280 organizations and individuals, that calls on Congress to finish FY17 appropriations instead of saddling our nation with another CR. We believe it is important not to remain silent, to help dissuade Congress from passing a CR that goes beyond March and to underscore that flat-funding squanders life-saving scientific progress. 

Congressional leaders negotiated a 21st Century Cures package (21stCC ) over Thanksgiving that was passed by the House on Wednesday, November 30, and Senate consideration is expected early the week of December 5. The legislation supplements the House version of 21stCC, with key provisions from the package of “Innovation” bills that the Senate HELP Committee passed earlier this year. Provisions have also been added to provide an accelerated regulatory pathway for regenerative therapies.

The bill provides $4.77 billion for NIH and $500 million for FDA over a 10-year period. The NIH funding is allocated as follows: $1.5 billion for the Precision Medicine Initiative, $1.5 billion for the BRAIN Initiative, $1.8 billion for the Cancer Moonshot, and $30 million for clinical research to regenerative medicine using adult stem cells. In addition to the “Cures” provisions, the bill provides $1 billion in funding for grants to states to combat the opioid crisis, includes provisions intended to strengthen mental health care quality and access, and incorporates several previously agreed upon Medicare policy changes. 

While the funding is fully paid for and is not counted against the discretionary budget caps, appropriators would still need to sign off each year in order for the funding to be released. “Pay-fors” to cover the cost of 21stCC include proceeds from selling off part of the Strategic Petroleum Reserve and dollars redirected from future increases in the Prevention and Public Health Fund (PPHF). We are disappointed that policymakers chose to redirect future increases in the Prevention and Public Health Fund to help offset the cost of this legislation, since that fund is a strategic investment in its own right. Nonetheless, we believe this bill is beneficial to our nation and hope that the House and Senate swiftly pass the bill.  

Giving Thanks to Our Public Health Heroes

On November 21, the Monday before Thanksgiving, Research!America and leading public health organizations recognized the public health professionals who work diligently to stop the spread of harmful viruses such as Zika, address issues such as the growing opioid epidemic and antibiotic resistance, and protect us from hazards such as contaminated drinking water.

“It’s easy to miss public health successes – you don’t see the heart attacks that don’t happen, the years added to the lives of those who quit smoking, or the flu death avoided because of vaccines,” said Thomas Frieden, M.D., MPH, director of the Centers for Disease Control and Prevention (CDC). “To all who have dedicated their careers to help us live our lives to the fullest, thank you!”

More than 1,000 individuals and organizations joined Research!America on social media with the hashtag #PHTYD, garnering more than 5.9 million impressions on Facebook and Twitter. Notable participants included NIH director Francis Collins, M.D., Ph.D., Surgeon General Vivek Murthy, M.D., Sen. Lisa Murkowski, Rep. Rob Wittman, and Rep. Joyce Beatty

Bipartisan co-chairs of the Congressional Public Health Caucus, Representatives Rob Wittman (R-VA), Gene Green (D-TX), Kay Granger (R-TX), Lucille Roybal-Allard (D-CA), and Jim McGovern (D-MA) have expressed their support for PHTYD by introducing a resolution (H.Con.Res.172), which expresses the sense of Congress that public health professionals should be commended for their dedication and continued service on Public Health Thank You Day.

Research!America thanks all of our Public Health Thank You Day partners. Click here to view a complete list of our partners.

For more information, visit www.publichealththankyouday.org, and view Research!America’s Storify board for a recap of #PHTYD activity on social media.

New Report Offers Recommendations on the Future of NIH

The most pressing task for the new Administration, according to a recently released report, is to appoint a new National Institutes of Health (NIH) director – someone who is familiar with the agency, well-respected in their field, “wise and bold.” The report, A Vision and Pathway for NIH, was prepared by leading scientists and policy experts for the transition team of President-elect Donald Trump to further advance the nation’s leading biomedical research and health agency. The goal is to ensure NIH remains globally competitive, strengthening the agency’s impact on research, training and health outcomes.

The report was written by an ad hoc working group led by Research!America board member Keith Yamamoto, Ph.D., vice chancellor for science policy and strategy; director, UCSF precision medicine; vice dean for research, School of Medicine, University of California San Francisco, and former federal agency officials including NIH directors Harold Varmus, M.D., Lewis Thomas University professor, Weill Cornell Medicine, and Elias Zerhouni, M.D., president, Global Research & Development, Sanofi, and Research!America board member. Mary Woolley, president & CEO of Research!America, was among the working group advisors.

“We really wanted to stay clear of the open-hand message that just says, ‘If you give us more money we'll do better,” said Yamamoto in an interview with Science magazine. “We tried to make recommendations that would be actionable without more money.” Yamamoto hopes there's an opportunity to remind the Trump Administration and Congress that NIH funding supports robust local economies in almost every state across the U.S.

Recommendations also include broadening the expertise of peer review panels so they can better assess transdisciplinary research, and a grant program to support NIH’s in-house scientists when they move into academia, which would support young investigators. The report outlines tasks to accomplish in the first 100 days such as convening a Strength in Science Taskforce, and inviting NIH to prepare and submit a rolling five-year professional judgment budget to Congress. For the full report, visit www.nihvp.org

New Fact Sheet Series: Innovation in Your State

Research!America recently released a state-based fact sheet series, Innovation in Your State. The series provides a state-by-state snapshot of public- and private sector-driven research at work, underscoring the pervasive impact and importance of our nation’s research ecosystem, and enabling advocates to demonstrate to federal policymakers that the research they support is actually taking place in their own backyards.  

The initial release includes nine states: California, Georgia, Massachusetts, Mississippi, North Carolina, North Dakota, New York, Ohio, and Wisconsin, with more to follow. The remaining states will be released throughout the next several months, so check the fact sheet page on Research!America's website periodically for updates. 

Thank you to the Fight Colorectal Cancer Foundation for helping us capture the patient-perspective in many of the fact sheets included in this first release. Click here to view the fact sheet series.  

amfAR’s HIV Cure Summit Highlights Progress

The amfAR Institute for HIV Cure Research held its annual HIV Cure Summit on World AIDS Day, December 1, to discuss progress toward a cure for HIV. The San Francisco-based Institute was launched by amfAR, The Foundation for AIDS Research, on the eve of World AIDS day in 2015 at the University of California, San Francisco (UCSF). The Institute’s 2016 summit featured leading researchers from the UCSF-Gladstone Center for AIDS Research, UCSF AIDS Research Institute, the Blood Systems Research Institute, and the Gladstone Institute of Virology and Immunology. For more information about The amfAR Institute for HIV Cure Research and its current work, click here. For more information about amfAR, The Foundation for AIDS Research, visit www.amfar.org

Regular Features

President's Letter

Mary Woolley, President and CEOWith a highly contentious -- and in so many ways unprecedented -- election behind us, an unparalleled time of transition is now consuming most of our attention, and perhaps yours as well. While some people seem to be opting out of engagement with the process, we think it is exactly the time to weigh in. New appointments will be made, and the current and incoming Congress will make decisions -- including decisions to take no action, which is also a decision -- and the nation will feel the impact. 

There are many ways for research advocates to take action, including contacting your current and any new members of Congress to stress the importance of making research for health a higher national priority. Consider reaching out to any contacts you may have among those named to the transition or announced as President-elect Trump's selections for the Cabinet and other posts. The President-elect's transition team also has a special website that invites public input. It's tempting to think that weighing in at www.greatagain.gov will have no impact, but I think it is important to show strength and solidarity by taking this challenge at face value. Please join me in speaking up and being heard. Read specifics of our activities elsewhere in this newsletter and on our website. Too much is at stake to stand back now!

Member Spotlight: Alzheimer’s Drug Discovery Foundation

Founded: 1998

Location: New York, NY

Mission: To rapidly accelerate the discovery of drugs to prevent, treat and cure Alzheimer's disease.

 Howard Fillit, M.D.The mission of the Alzheimer's Drug Discovery Foundation (ADDF) is to rapidly accelerate the discovery of drugs to prevent, treat and cure Alzheimer's disease. Founded in 1998 by co-chairmen Leonard A. and Ronald S. Lauder, the ADDF is a leader in funding innovative Alzheimer’s drug research worldwide. The ADDF focuses on translating the knowledge gained about the causes of Alzheimer's disease into drugs to conquer it, and supports an underfunded area-- preclinical drug discovery and early-stage clinical trials of potential drug targets. 

The Alzheimer’s Drug Discovery Foundation (ADDF) is the only charity solely focused on finding drugs to prevent and treat Alzheimer’s disease and related dementias. Since 1998, it has invested nearly $100 million to advance the most promising ideas to cure these diseases.

Alzheimer’s disease is uniformly fatal. No approved drugs are available to prevent it or even slow it down—current drugs only address symptoms of the disease, not its causes. The lack of treatment options has serious consequences. Recently, Alzheimer’s and related dementias became the most common cause of death in the UK. In the United States, Alzheimer’s is the sixth leading cause. More than 5 million Americans are living with the disease, and that number is expected to triple by 2050.   

Howard Fillit, M.D., Founding Executive Director and Chief Science Officer of the ADDF says: “Drug discovery is our best hope to stop this looming health crisis. With effective drugs, Alzheimer’s could become a manageable illness, like heart disease or hypertension. The ADDF is committed to making that vision a reality.”

The ADDF supports drug discovery and early-stage clinical trials, which are critically underfunded areas of research often referred to as the “valley of death.” In a 2015 article in the Washington Post, Francis Collins, M.D., Ph.D., director of the National Institutes of Health, said: “It’s where great ideas, unfortunately, go to die.” Drug discovery involves translating knowledge about the underlying causes of a disease into drugs to treat it. In recent years, researchers have found many processes that contribute to Alzheimer’s disease. But creating drugs to tackle those causes is risky, as every new approach is untested. Corporate and government funders are risk-averse and most traditional philanthropies focus on “basic research” into the underlying causes.

The ADDF assumes the risk and bridges the funding gap, so pioneering researchers can pursue ideas for new drugs. And its approach is working. There are over 100 potential treatments for Alzheimer’s now in clinical trials, and more than 20 percent received funds from the ADDF. This includes a novel drug to improve the function of synapses in the brain, being developed by Jerri Rook, Ph.D., and a team at Vanderbilt University.  

Once a potential drug reaches later stages of development, such as phase 2 or 3 clinical trials, it can often attract support from the pharmaceutical industry or federal funders. Unfortunately, in Alzheimer’s the available support is limited. Despite being the only top 10 cause of death without treatment options, Alzheimer’s receives far less in federal research funding than diseases that are treatable. But thanks to Research!America, that is beginning to change. The NIH allocated more for Alzheimer’s research this year than ever before, and more of those funds support clinical trials. The ADDF will continue to ensure that the most promising drugs have support to advance to clinical trials, and Research!America will continue to advocate for increased federal funding for such research. Effective drugs will make it into the hands of patients with Alzheimer’s.

For more information, visit www.alzdiscovery.org.

From Washington

Panelists Discuss Key to Accelerating Medical Progress

Francis Collins, M.D., Ph.D.Sustained and predictable growth and support for the National Institutes of Health (NIH) is crucial to advance cutting-edge research that could lead to new discoveries and treatments for deadly disease, said NIH Director Francis Collins, M.D., Ph.D. During a program hosted by the Bipartisan Policy Center titled “Realizing the Promise of Medical Innovation” on November 17, Collins said he’s grateful for the 7% increase for NIH in FY16 after many years of stagnant funding. “It has given a sense of excitement and opportunity to our remarkable biomedical workforce, especially young scientists,” he said. “I can’t say how critical it is that that not be a one year wonder, but rather the start of a trend.”

The panel discussion, moderated by Janet Marchibroda, director of health innovation, BPC, brought together perspectives from patients, advocates, policymakers and industry to discuss what the future holds to accelerate medical progress, including Cures legislation pending in Congress which would accelerate the discovery, development and delivery of new therapies for patients. The measure would improve the Food and Drug Administration’s drug approval process and help the agency attract and retain highly-skilled scientists.

The FDA needs systemic reform to ensure that new products are appropriately regulated to meet the needs of patients, added Andrew von Eschenbach, M.D., president, Samaritan Health Initiative and former FDA commissioner.

Ellen Sigal, founder and chair, Friends of Cancer Research, hopes that the President-elect will think about patients’ lives when considering support for medical and health research. “We don’t discuss the human toll a lot…disease is not partisan,” said Sigal.

“I have every belief we will treat, cure and diagnose every disease known to man,” said James Greenwood, president and CEO, Biotechnology Industry Organization. But pharmaceutical price controls to address drug pricing issues would stifle innovation, he added.  More collaboration between payers, patients, providers and industry to develop a policy framework that works for all stakeholders, he said, is the best approach.

Mary Woolley, president and CEO of Research!America, said health IT will enable patients to be more engaged with research and health care but interoperability issues must be addressed. “Why don’t we have access to our health data anywhere we are? Why doesn’t the research and technology community have access to it? People want that,” she said. “It’s time to put that willingness and urgency to work and the Cures legislation can help get us there,” added Woolley. 

For video and photos of the event, click here

 

CDC’s Clarion Call to Get Vaccinated

The flu season is here, but it’s not too late to get vaccinated. That’s the message from the Centers for Disease Control and Prevention (CDC) for National Influenza Vaccination Week (NIVW), December 4-10.  The agency is using print materials, web tools, images, and animations to raise awareness about the importance of getting vaccinated, not just during the fall but through the upcoming winter holidays and beyond. 

The timing is important because, according to the CDC, only 40% of Americans who need flu shots get them by the end of November. Among NIVW’s goals is to encourage high-risk groups like pregnant women, people with certain chronic health conditions like asthma, diabetes, heart disease or lung disease, people 65 years and up, and young children to get vaccinated.

During the 2014 to 2015 flu season, CDC reported 148 flu-related pediatric deaths. In addition to loss of life, failure to get a flu vaccine can take a huge economic toll. Some estimates put the flu’s total economic burden at approximately $87 billion annually, and studies show that getting children vaccinated could save parents as much as $4,000 in out-of-pocket medical costs. 

The CDC is encouraging NIVW partners and members of the public to use the #FightFlu hashtag on social media to spread the word about why it’s so important to get a flu shot.
For more information and to access an online toolkit with resources, visit www.cdc.gov/flu/nivw.  

In the News

Media Matters

21st Century Cures Act

Mary Woolley, President and CEOResearch!America president and CEO Mary Woolley was quoted in STAT News in support of the 21st Century Cures Act but expressed disappointment that the Prevention and Public Health Fund was used to offset the cost of the legislation. Woolley was also quoted about the Cures bill in FDA Week, Medpage Today, and The Cancer Letter.

Ellie Dehoney, Research!America's VP of policy and advocacy, was quoted on NPR News – All Things Considered praising the Cures legislation inclusion of the cancer moonshot initiative. Dehoney was also quoted in S&P Global, Modern Healthcare, and POLITICO Pro about the bill.  

Research!America Post-Election Briefing

The Honorable Louis Sullivan, M.D.

 

The Hon. John E. Porter Research!America Chair; the Hon. Michael N. Castle, Research!America vice chair; the Hon. Louis Sullivan M.D.; and Research!America board member and AAAS CEO Rush Holt, Ph.D. were among the panelists at Research!America’s post-election briefing on Nov. 15. They were quoted in STAT News, AAAS News, and BloombergBNA about the prospects for medical research in the new Congress along with other issues.

 

 

HHS SecretaryGeorges Benjamin, M.D.

In a Nature article about president-elect Donald Trump’s selection of Rep. Tom Price, Research!America board member Georges Benjamin, M.D., director of the American Public Health Association, commented that the public health community will work with him, if confirmed, and emphasize prevention as an important health issue.

Trump Administration’s Scientific Priorities

Keith R. Yamamoto, Ph.D.

In a Nature article about the incoming U.S. President’s scientific priorities, Mary Woolley said that his silence on biomedical science suggest that it may not a priority for the next Administration. “A lot of it is not really controversial. We tend in this country to take progress for granted,” said Woolley.

Keith R. Yamamoto, Ph.D., Research!America board member and executive vice dean of the school of medicine at University of California, San Francisco, was quoted in an NPR news article about the outlook for the NIH in a Trump Administration.

 

Campaign for Cures

A podcast from Genetic Engineering & Biotechnology News featured comments from Mary Woolley about key research related issues the next president will likely confront.

Woolley also penned an op-ed on Damon Runyon Cancer Research Foundation blog about the research priorities for the administration. “The next President's first budget for science and health agencies should be bold, so as to further embolden the next Congress,” she wrote.

Pandemic Preparedness

Victor Dzau, M.D.

 

A video from Medscape featured Research!America board member and National Academy of Medicine president, Victor Dzau, M.D., discussing a framework for countering emerging infectious disease outbreaks and pandemics. 

Media Contacts

Suzanne Ffolkes
VP Communications
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We have health challenges in this country that science will provide answers for if given the chance and we haven't given science that opportunity
Mary Woolley, President and CEO, Research!America