The Research Advocate, our award-winning membership newsletter, provides the latest news and information on medical, health and scientific research advocacy, as well as reports from Research!America and member organizations. Regular features include policy articles, profiles of Research!America members, media coverage of research advocacy issues, a column by Research!America President and CEO Mary Woolley, and important updates to help our members in their own efforts to make research to improve health a higher national priority. For questions or comments contact Jennifer Santisi,

From Research!America

Honorees Share Their Passion for Research and Advocacy

Advocacy for research and innovation is central to ensuring progress in the fight against disease and disability. Honorees at Research!America’s Advocacy Awards Dinner on March 16 in Washington, D.C., emphasized that point as they were recognized for their achievements in medical, health and scientific research.

“The gratification of what we’ve been able to do in health research has been incredible,” said Senator Roy Blunt (R-MO). “Hopefully with your advocacy and my colleagues, we’ll step up once again and do things that allow this to become the norm rather than the exception,” he said, referring to the $2 billion increase for the National Institutes of Health (NIH) in FY16. Senator Blunt and Chairman Tom Cole (R-OK) received the Edwin C. Whitehead Award for Medical Research Advocacy. Chairman Cole talked about the importance of spending more money solving disease, rather than treating and managing it. Policymakers can work together in support of the NIH and the Centers for Disease Control and Prevention even “in a very divided” and polarized time, he said.

Harold Varmus, M.D., Lewis Thomas professor, Weill Cornell Medicine, received the Legacy Award. He stressed the need to promote and preserve science, “because it represents the best of what we have been-- and must continue to be-- as a nation.”    

Other honorees included Lisa Paulsen, president and CEO of the Entertainment Industry Foundation, who accepted the Isadore Rosenfeld Award for Impact on Public Opinion on behalf of the organization, which harnesses the collective power of Hollywood to raise awareness and funds for critical health, educational and social issues. The Raymond and Beverly Sackler Award for Sustained National Leadership, was given to Robert Langer, Sc.D., David H. Koch Institute professor, MIT. Trish and George Vradenburg, co-founders of UsAgainstAlzheimer’s (UsA2), received the Gordon and Llura Gund Leadership Award

The Honorable John Edward Porter

Barbara Newhouse, president and CEO of The ALS Association, and Lorri Carey, a patient advocate accepted the Paul G. Rogers Distinguished Organization Advocacy Award on behalf of The ALS Association. John Noseworthy, M.D., was honored with the Geoffrey Beene Builders of Science Award. Ronald Petersen, M.D., Ph.D., director of the Mayo Alzheimer's Disease Research Center, accepted the award on Dr. Noseworthy’s behalf. 

Research!America Board Chair The Honorable John Edward Porter commended Sen. Blunt and Rep. Cole for their “shared commitment” to improving human health. He also reminded attendees about the importance of voting in this year’s election, noting that the next president will appoint the heads of the federal health agencies. 

Nominations for the 2017 Advocacy Awards are now being accepted through May 20, visit and nominate an outstanding advocate for medical and health research.

For a special insert of the 2016 Advocacy Awards dinner and honorees, click here

Research!America’s 27th Annual Meeting of Members

Lorri CareyLorri Carey’s life changed forever when she received the news that she was suffering from ALS. “When ALS hits a family, it hits hard and advocacy is the bottom of the to-do list,” she said. “Our family is grateful that my slow progression has allowed me to play a role” in public policy. Carey, a patient advocate with The ALS Association, was among the speakers at Research!America’s 27th Annual Meeting of Members held at the Willard Intercontinental Hotel in Washington, D.C., on March 16. She described her experiences living with ALS and progress in the treatment and research of ALS. “It’s encouraging to see advances to better the lives of patients that would lead to a cure,” she said.

The Annual Meeting also featured guest speakers Robert Califf, M.D., commissioner of the Food and Drug Administration (FDA) and Senator Amy Klobuchar (D-MN). Increasing federal funding for research, incorporating the patient voice in drug development and harnessing the power of precision medicine were among the topics discussed. Dr. Califf emphasized FDA’s mission in keeping Americans safe while promoting innovation. He also shared his priorities for the agency which include strengthening the workforce, increasing quality of evidence and addressing the opioid epidemic. “Great science is a product of the people, so here at FDA our number one priority is workforce…it needs to be embedded in the great traditions of the FDA,” he said.

Senator Klobuchar described the positive impact of medical research on the U.S. economy. “The life sciences industry contributes $69 billion to the economy annually and supports more than seven million jobs,” she noted. The $2 billion increase for the National Institutes of Health in FY16, she added, is a positive sign that Congress can work across the aisle in support of research.

Federal Policy Update

As the appropriations process continues, “Dear Colleague” letters for the National Institutes of Health (NIH) and Agency for Healthcare Research and Quality (AHRQ) in the House and Senate, and the National Science Foundation (NSF) in the House, have been submitted to committee leadership with significant bipartisan support. 

The House Labor-H Subcommittee held a hearing on NIH appropriations for FY17. Chairman Tom Cole (R-OK), Ranking Member Rosa DeLauro (D-CT), and subcommittee members expressed disappointment with the President’s budget request, which relies on mandatory funds to backfill cuts in discretionary funding. Chairman Cole was adamant that NIH would not see any budget cuts. NIH director Francis Collins, M.D., Ph.D., made a compelling case for the value of NIH dollars.

The House Commerce, Justice, Science (CJS) Subcommittee held an FY17 hearing. NSF director France Córdova, Ph.D., testified about a wide range of NSF priorities including the importance of basic science; workforce development; and a science-driven, balanced research portfolio. The latter comments arise from concern the House CJS bill will once again usurp NSF’s authority to make directorate level funding decisions. 

The Senate HELP Committee’s “Innovations Initiative” – a companion process to the House 21st Century Cures Act (H.R. 6) – is ongoing. After the first tranche of bills passed in early February, the Committee passed a second set of bipartisan “Innovations” bills in March, which focus on a range of topics from combination products to health IT. The third Innovations mark-up is scheduled for April 6. 

To address funding left out of the Innovations Initiative, the HELP Committee Democrats introduced the National Biomedical Research Act (S.2624) which would provide a new mandatory funding stream for NIH and FDA, "earmarked" for such initiatives as precision medicine and a cancer moonshot. HELP Committee Chairman Lamar Alexander (R-TN) has not ruled out mandatory funding, but has asserted that such funding will not be negotiated until Innovations legislation is considered by the full Senate.  

The House Energy and Commerce Committee has established a “Select Investigative Committee on Fetal Lives,” which is largely focused on fetal tissue research. The committee’s work, coupled with state legislative activity, places the future of fetal tissue research at risk. 

Action Alert

Ask the Senate to Speed Medical Progress
Now is the time to talk to your Senators about the importance of passing “Innovations” legislation this year. Take this opportunity to urge your senators to harness the bipartisan momentum for cures by considering and passing Innovations legislation. 

To contact your representatives, click here.

Raising Awareness for Parkinson’s Disease

Credit: Parkinson's Disease FoundationDuring the month of April, the Parkinson’s Disease Foundation’s (PDF) You Can Help Us #EndParkinsons campaign, empowers patients and their families, researchers, health professionals and others to raise awareness and encourage their communities to help end the disease. PDF provides an online toolkit with social media messages, and a sample op-ed and letter to the editor to tailor to your organization or personal experience with Parkinson’s. The Foundation also distributes free educational and print materials, awareness posters, and tree ribbons to help advocates join in the movement.

Since its founding in 1957, PDF has dedicated nearly $110 million to fund the work of leading scientists throughout the world and nearly $47 million to support national education and advocacy initiatives. April is Parkinson’s Awareness Month. More than 50,000 Americans each year are diagnosed with Parkinson’s disease, an estimated seven to 10 million people worldwide live with Parkinson's, and there is currently no cure. To help raise awareness, use the hashtag #EndParkinsons on Facebook and Twitter, and join PDF’s Thunderclap campaign by April 15. To find community events in your area, click here.  

The Economic Value of Medicines

Credit: PfizerIn a nation where science and medical advances have significantly raised the bar on modern healthcare, American consumers have come to expect quality prevention, diagnostic and treatment options. With innovative medicines comes relief, healing and sometimes cures, but with a big price tag to both individuals and the health care system. Drug innovation is based on research that begins in the lab and moves through the development and testing process all the way to the end-run: FDA-approved medicines that are safe and effective for their intended use.  

Drug development– and all of the research that it requires– is a long and arduous process, but the final products provide value in many ways. As patients and consumers, we measure the impact of medicines by improvement in our quality of life, but do we give thought to the economic value that medicines bring to society as a whole?

One of the world’s largest health care companies, Pfizer, has worked hard to provide patients and clinicians with data to show that medicines do provide tremendous value to both individuals and society.  In a series of papers, called “Value of Medicines,” they have taken a look at a host of health conditions, such as psoriasis, rheumatoid arthritis and others, and addressed the economic impact of medications used to treat them. They also have examined the economics of general health measures, such as vaccines and drug adherence.  

The data for the series come from published, peer-reviewed studies and the papers are brief and easy to access. We think the series will provide you with a deeper understanding of the value of medicines. Follow the link for a full list of downloadable papers and colorful infographics that make the content easy to understand: Also, find more information on Twitter at #valueofmeds. 

Using Smart Phones to Collect Research Data

Researchers at the University of North Carolina (UNC) School of Medicine will use a new iPhone app to recruit women who have had postpartum depression for a study. The goal of the initiative is to collect around 100,000 DNA samples and compare them with DNA from women who have never experienced depression in hopes of discovering genetic factors that could lead to better prediction, diagnosis and treatment for maternal mental illness. The app is part of Apple’s ResearchKit, which is an open-source framework that allows researchers to create app-based studies with global reach. “Between 12 and 23 percent of women will experience symptoms of depression after pregnancy, and this app will help us better understand why,” said Samantha Meltzer-Brody, M.D., MPH, director of the Perinatal Psychiatry Program at the UNC Center for Women’s Mood Disorders. “We hope that women will share their experiences so that we can more effectively diagnose and treat PPD in the future.”

Elsevier Launches Zika Virus Resource Center

The Zika Virus Resource Center, supported by Elsevier, provides information on the virus to medical professionals, health researchers, policy makers, media and the general public. The virus, which is spread by mosquitoes, has been declared a public health emergency of international concern by the World Health Organization.  The Center includes commentaries from experts and clinicians, publicly available research articles from peer-reviewed journals, patient and traveler information and other online resources. The portal also includes information for researchers working on developing a vaccine for the Zika virus through Scopus, the world's largest abstract and citation database of peer-reviewed literature, to find both the latest and top-cited research, potential research partners and journals. To access the resource center, click here

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


2016 Advocacy Awards

Dinner Host:

Janssen Pharmaceutical Companies of Johnson & Johnson

Presenting Partner:


Program Partner:



Novartis International



Bristol-Myers Squibb

The Rockefeller University

Society for Neuroscience

Weill Cornell Medicine


American Association for the Advancement of Science

American Cancer Society

Hogan Lovells US LLP

The Johns Hopkins University

Louisiana Research Summit

Louisiana State University

Campaign for Cures

Pfizer Inc (Principal Partner)

Ohio Research Forum


2016 National Health Research Forum



New Members

American Association of Tissue Banks

American Society for Nutrition

Barth Syndrome Foundation


Beyond Celiac


Georgia Center for Oncology Research and Education (Georgia CORE)

Hereditary Neuropathy Foundation

MassBio (Massachusetts Biotechnology Council)

Renewing Members

Alzheimer’s Association

American Academy of Nursing

American College of Sports Medicine

American Psychiatric Association

American Society of Gene & Cell Therapy

Association for Psychological Science

Biotechnology Innovation Organization

Cleveland State University

Colgate-Palmolive Co.

debra of America

Feinberg School of Medicine, Northwestern University

The Feinstein Institute for Medical Research

Fred Hutchinson Cancer Research Center

GE Healthymagination


Lupus Foundation of America, Inc.

National Foundation for Ectodermal Dysplasias

Neuroendocrine Tumor Research Foundation

New Jersey Association for Biomedical Research

The New York Stem Cell Foundation

Oral Health America

The Rockefeller University

The Smith-Kettlewell Eye Research Institute

University of North Carolina School of Medicine

The University of Texas Health Science Center at Houston

Vietnam Veterans of America

Yale University School of Nursing

Not yet a member? Join Research!America today at

Regular Features

President's Letter

Mary Woolley, President & CEOAs we enter the second quarter of the year, election season is in full swing. We have yet to hear much at all about what candidates for the presidency, not to mention for Congress, would do, if elected, to assure that research and innovation are a high priority in a nation that aspires to medical progress; to finding solutions to what ails us. Research!America’s voter education initiative, Campaign For Cures, is underway and awaits your engagement. As I noted in my closing remarks to guests at our recent awards dinner, so much is at stake, it’s critical that we all engage in this election cycle. Research for health won’t become a talking point on the campaign trail all by itself; it won’t become a higher national priority all by itself. It needs all of us to speak out. Please visit for more information.

My remarks were not, however, the highlight of our awards event!  An inspiring combination of eloquence and straight talk distinguished the comments of both presenters and awardees.The same and more was true of the address by our always-on- point Chair, John Porter, who reminded advocates for science research that the next President will appoint the heads of our federal health agencies; we must choose our next leader wisely. And we must do the same for choosing members of Congress if we hope to build on the current momentum for research on Capitol Hill. To read Porter’s full speech and view photos and videos of the Dinner program, click here. The nominations process for the 2017 Advocacy Awards is now underway. Consider who you know who is deserving of an award from Research!America, and submit your nomination online here.

Member Spotlight: University of North Texas Health Science Center

Founded: 1970
Location: Forth Worth, Texas
Mission: Creating solutions for a healthier community.

David P. Cistola, M.D., Ph.D.The University of North Texas Health Science Center (UNTHSC) is one of the nation’s premier graduate academic medical centers, with five schools that specialize in patient-centered education, research and health care. The UNT Health Science Center comprises the Texas College of Osteopathic Medicine (TCOM), the Graduate School of Biomedical Sciences, the School of Public Health, the School of Health Professions, the UNT System College of Pharmacy, plus other centers and institutes. UNT Health handles over 600,000 patient visits annually. The group's 230 physicians practice in 40 medical and surgical specialties and subspecialties, including allergy/immunology, family practice, cardiology, neurology, obstetrics & gynecology, oncology, orthopedics, psychiatry, sports medicine and neurosurgery.

Tucked in the Cultural District of Fort Worth, the University of North Texas Health Science Center (UNTHSC) is home to one of the nation’s most comprehensive health care educational programs.

Since the opening of the renowned Texas College of Osteopathic Medicine in 1970, UNTHSC has evolved to include graduate schools for pharmacists, physician assistants, physical therapists, public health experts and biomedical scientists. In the works is a new medical school with Texas Christian University, which when completed will make UNTHSC one of the few academic medical centers in the country training both allopathic and osteopathic physicians.

Meeting the community’s healthcare needs is a top priority for UNTHSC, which graduates the second highest percentage of primary care physicians of any medical school in the country. 

“We are equally as committed to the advancement of research in diverse fields and the reduction of health disparities around the globe,” said David P. Cistola, M.D., Ph.D., vice president for Research & Innovation. “Our internationally known researchers are taking the lead in exploring new approaches to the prevention and treatment of Alzheimer's disease, ocular diseases, cardiovascular and metabolic diseases, and cancer.”
UNTHSC serves as home to a number of NIH- and federally funded research and training programs and currently leads all Texas health science centers in the rate of research growth.

A blood test under development by UNTHSC researchers could one day make it possible to identify early Alzheimer’s disease. Across campus, the North Texas Eye Research Institute is focused on discovering the cause of vision-robbing diseases. In the quest to reduce side effects from chemotherapy, UNTHSC researchers are using HDL-like nanoparticles as trojan horses to deliver chemotherapy directly to tumors.

UNTHSC’s renowned forensics and applied genetics program is one of the most advanced in the country, working with police departments and government agencies worldwide to identify missing persons and human remains, and to address the problem of human trafficking using next-generation DNA technology.

In the pharmaceutical world, UNTHSC is helping start-ups reach the marketplace at lightning speed. The Tech Fort Worth-UNTHSC Accelerator Lab served as home to biotech companies, such as ZS Pharma, which was recently acquired by AstraZeneca for $2.7 billion.

Long known for educating health professionals to serve minority populations, they continue to find innovative ways to 
address this urgent need. Professor J.K. Vishwanatha is one of four leaders of the NIH-funded National Research Mentoring Program, which is designing a mentoring network to help researchers from underrepresented minorities thrive in biomedical careers.

UNTHSC’s efforts are strengthened by Research!America and its dedication to supporting innovative therapies, promoting new discoveries and serving as an advocate for the future of medicine. “Research!America is a very strong advocate and valuable asset,” said Dr. Cistola. 

To learn more, please visit

From Washington

Briefing on Drug Development and Basic Research

More than 1.6 million people developed cancer in the U.S. in 2015. Cancer also has a major fiscal impact: the economic burden totaled $263.8 billion in 2013, translating to nearly $900 per American. On March 10, Research!America, in partnership with AcademyHealth, American Cancer Society, and Celgene Corporation convened a panel of cancer experts to discuss how research is working to stop cancer.  

Lisa Simpson, M.B., B.Ch., MPH, president and CEO of AcademyHealth, started the conversation by outlining cancer innovation as a continuum, including basic, clinical, population, health services, and translational research. Jan Eberth, Ph.D., discussed her cancer epidemiology work as an example of population-based research, and Larry Kessler, Sc.D., discussed the return on investment on health systems research. Of note, Dr. Kessler cited the Women’s Health Initiative, which led to an economic return of $140 for every $1 spent on the trial.

Joel Beetsch, Ph.D., vice president of global patient advocacy and corporate affairs at Celgene, outlined how investment by both the public and private sectors has led to better cancer treatments and reminded the audience that only 1% of U.S. health care dollars are spent on cancer research.

Rounding out the panel was Michael Holtz of the American Cancer Society Cancer Action Network. He provided a closer look at the patient experience by giving an account of his battle with cancer and his journey for a cure, as well as the reality of living with unexpected side effects after his successful treatment.

Public Health Summit Discusses Mental Health Challenges

The Milken Institute’s inaugural Public Health Summit co-hosted with the George Washington University (GWU) in March, brought together more than 600 decision-makers to discuss topics ranging from cancer research to antibiotic resistant bacteria to mental health. FasterCures executive director Margaret Anderson moderated the session, “Mental Health: A Global Challenge We Can’t Ignore.”

Pamela Collins, M.D., MPH, director of the Office for Research on Disparities and Global Mental Health at the National Institute of Mental Health, said funding for mental health research has increased, but is still not enough to address needs. “When you look around the world, there’s only on average 9 providers for every 100,000 people...there’s a huge need in terms of human resources,” said Dr. Collins. “There are shortages in the U.S. as well.”

“It wasn’t too long ago in our history that many believed children did not experience significant mental health problems and illness,” said Olga Acosta Price, Ph.D., associate professor for prevention and community health at GWU. She said 75 to 90 percent of children with mental health disorders fail to receive appropriate treatment or support.

Panelists also discussed how mental health conditions often develop among patients with HIV, cardiovascular disease and diabetes, and that mental health prevalence and access to treatment vary greatly along socioeconomic status, education, race and many other factors. Other panelists included Paolo del Vecchio, MSW, director, Center for Mental Health Services at the Substance Abuse and Mental Health Services Administration (SAMHSA); and Charles Ingoglia, MSW, senior vice president at the National Council for Behavioral Health. To view a video of the panel, click here

Tuberculosis: Research and Public Health Challenges

Ya Diul Mukadi, M.D., MPHTuberculosis (TB) is the number one infectious disease killer in the world, surpassing even HIV. During World TB Day, March 24, the Congressional TB Elimination Caucus joined the American Thoracic Society (ATS) and National Tuberculosis Controllers Association (NTCA) for a Capitol Hill briefing featuring a panel of physicians and a patient advocate. Ya Diul Mukadi, M.D., MPH, senior TB technical advisor at the Bureau for Global Health at USAID said while the incidence of TB has decreased by 43% globally since 1990, the disease claims 1.5 million lives annually. “We still have plenty of work to do and we still have major challenges we continue to face.” He mentioned the work of health agencies such as the National Institutes of Health (NIH) and Centers for Disease Control (CDC) to reduce TB incidence by 90% and find treatments for multidrug resistant tuberculosis (MDR-TB) by 2035.

Carrie Fritschy, an advocate and mother of Scarlett, a TB survivor, explained that it took nearly five months for her daughter to be properly(L to R) Philip LoBue, M.D.; Carrie Fritschy; Ya Diul Mukadi, M.D., MPH; Jeffrey Starke, M.D. diagnosed and treated for the disease. “There is hope,” she said. “It is curable, treatable, and preventable, but we need the funding to make sure that happens not only locally, but in the United States.” Philip LoBue, M.D., director of the TB Elimination Division of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the CDC, said that despite its rarity, TB is nowhere near eradication in the U.S. with 3.0 per 100,000 cases domestically. Furthermore, 2015 saw the first increase in 22 years in the number of TB cases in the U.S. Dr. LoBue stressed the importance of expanding efforts to reduce latent TB infection through research. “As long as TB is a global problem, we will have issues with TB in the United States. Anything we can do globally to help reduce TB will [also] benefit the United States.”

Jeffrey Starke, M.D., professor of pediatrics at the Baylor College of Medicine, said the diagnosis and treatment of TB lacks innovation and the methods we use today remain archaic compared to other areas of medicine. Dr. Starke emphasized the importance of investing in TB research, despite its infrequency in the U.S. “Ironically, because we are a low incidence country, we are often neglected in terms of money available for programs, research, and drug development.” He urged Congress to fund the White House’s National Action Plan for Combating MDR-TB and to support TB research at the National Institutes of Health. 

In the News

Media Matters

FDA Priorities

Robert Califf, M.D.

MedPage Today featured an article highlighting remarks from FDA Commissioner Robert Califf, M.D., a speaker at Research!America’s 27th Annual Meeting of Members. Califf discussed the agency’s priorities including: strengthening the FDA workforce, curbing the opioid epidemic, focusing on patient-centeredness in R&D, advancing precision medicine, and combating anti-microbial resistance.



Candidates, Plans to Address Alzheimer’s Trish Vradenburg

Research!America’s 2016 Advocacy Award honoree Trish Vradenburg, co-founder of  UsAgainstAlzheimer's, penned an op-ed for The Star-Ledger, calling on all presidential candidates to share their plans to stop the disease, noting Hillary Clinton’s proposed strategy. “Other candidates can also announce a plan to stop Alzheimer's. I eagerly invite them to do just that.”

Moonshot Initiative Leadership

Mary Woolley, President and CEO

Mary Woolley, president and CEO Research!America, expressed her support for Gregory Simon, following Vice President Joe Biden’s announcement that Simon will lead the “moonshot” cancer initiative in The New York Times.




Mail Order Pharmacy Services Lucinda Maine, Ph.D., R.Ph,

In a Consumer Reports article about mail order prescription services, Research!America board member Lucinda Maine, Ph.D., R.Ph., executive vice president and CEO of the American Association of Colleges of Pharmacy, shared her concerns that mail order medications may not always arrive on time, which can be dangerous for people who depend on lifesaving drugs.

Diversity in Healthcare Leadership 

Georges Benjamin, M.D.

In a FierceHealthcare article about how diversity in leadership in hospitals and healthcare institutions leads to improved patient outcomes, Research!America board member Georges Benjamin, M.D., executive director of the American Public Health Association, noted that minority representation is attainable through a commitment to equity and recognition that diversity is important.



Reaching Underserved Communities Hortensia Amaro, Ph.D.

Research!America board member Hortensia Amaro, Ph.D., Associate Vice Provost for Community Research Initiatives and Dean's Professor of Social Work and Preventative Medicine at University of Southern California, was featured in a USC News article about the Smithsonian Institute honoring her contributions to the field of psychology as a woman of color in an exhibit titled “Finding Your Passion.”

Scientific Diplomacy 

Rush Holt, Ph.D.

Research!America board member, Rush Holt, Ph.D., chief executive officer of the American Association for the Advancement of Science, co-wrote an op-ed with Sergio Jorge Pastrana, executive director and foreign secretary of the Cuban Academy of Sciences, in The Orlando Sentinel about the importance of strengthening scientific partnerships between the U.S. and Cuba to advance medical progress.

Media Contacts

Suzanne Ffolkes
VP Communications

Anna Briseño
Communications Manager

Without research, there is no hope.
The Honorable Paul G. Rogers