Category Archives: Research Advocacy
Dear Research Advocate:
My colleagues at Research!America have shared the role as author of our weekly letter during my recent sabbatical. My thanks to them for providing timely and actionable information to our wide network. As I am “re-entering” the Washington space, I have been struck by (1) the significantly worse condition of the roads — potholes everywhere, and now even sinkholes in DC! I’ve been in several global capitals this spring, including in less-developed countries, and DC doesn’t look good in comparison. Via recent domestic travels, I can attest to the poor condition of our roads nationwide, taking a toll on vehicles and our economy, while eroding public confidence in government. Public goods — like infrastructure, education and science — that we have long nurtured through steady investment cannot continue to be resource-starved without dire consequences. No wonder the American public is angry at Washington! (2) I have come back just in time to witness the appropriations process grind to a halt. The clock is ticking down toward August recess, and appropriators have a new excuse for failure to take action, i.e., the migrant children emergency. There will always be national emergencies. By definition they are unpredictable, and some are more complex than others; it nonetheless cannot be acceptable for Congress to grind to a halt when one occurs. Continue reading →
Statement by Research!America COO Mike Coburn on Senate Labor-HHS-Education Appropriations Subcommittee Markup of FY15 Bill
The increase for the National Institutes of Health is a step in the right direction to accelerate medical progress but we cannot sustain our nation’s engine of discovery with dollops of fuel; a more robust investment is critical to maintaining our pre-eminence in science and saving lives. Researchers are closer to understanding ways to effectively treat and prevent Alzheimer’s disease, cancer, diabetes and other health threats that exact a tremendous financial and emotional toll on patients and their families. Yet federal funding has failed to keep pace with the level of scientific opportunity, and Americans are aware of the disconnect. More than half of those surveyed say elected officials in Washington are not paying enough attention to combating the many deadly diseases that afflict Americans, according to a poll commissioned by Research!America, and most agree that basic scientific research should be supported by the federal government. We applaud the leadership of Subcommittee Chair Tom Harkin in directing additional funds to the NIH. We hope that Congress will boost funding levels to at least $32 billion in FY15 and restore medical research and innovation as a source of hope, prosperity and national pride for all Americans.
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Dear Research Advocate:
Today, June 5, is a milestone in our Ask Your Candidates! (AYC!) voter education initiative. Today is the culmination of 5 by June 5, a nationwide push to encourage voters to ask their candidates about the priority of medical progress and encourage five others to do the same. There is still time for you to join us! Click here to send a message to the candidates running for House and Senate in your district. You can customize the message to include your personal reasons for supporting medical research or you can just click send on the message we’ve provided. In this case, it doesn’t just take a village, it takes a nation. Please help us reach voters in every state and every congressional district. Should accelerating medical progress be a higher national priority? If our future leaders understand that their answer to that question is truly important to Americans, perhaps they will enter office as research champions.
Last week, we shared a fact sheet about John Hudson Dilgen, a child with a debilitating and potentially deadly disease called Epidermolysis Bullosa. Medical research is about John. It is also about Carrie, a woman living with a severe form of Multiple Sclerosis. We hope you will find this fact sheet about Carrie useful in your advocacy. When we sent John’s story to Congress, the response was truly overwhelming. Carrie’s story will no doubt have the same impact.
Two articles, one in the Washington Post on June 1, and one in today’s New York Times, offer profound examples of the power of medical research. The Post article discusses accelerated approval of a new medicine that can extend life for a subset of patients with lung cancer, and the Times article describes DNA testing that led to the rapid diagnosis and successful treatment of a little boy whose life hung in the balance. Both of these stories involve precision or personalized medicine, a hallmark of modern medical progress. Continue reading →
By Peter W. Kalivas, PhD, President of the American College of Neuropsychopharmacology. Dr. Kalivas is Professor and Chair, Department of Neurosciences at the Medical University of South Carolina.
The American College of Neuropsychopharmacology (ACNP), founded in 1961, is the nation’s premier professional society in brain, behavior, and neuropharmacology research. The field of neuropsychopharmacology involves evaluating the effects of natural and synthetic compounds upon the brain, mind, and human behavior, and the ACNP serves as a forum for advancing the latest discoveries about the brain towards cures for neuropsychiatric diseases.
The core purpose of the ACNP is to catalyze and advance scientific discovery about disorders of the brain and behavior in order to help prevent, treat and cure brain diseases. The ACNP members are nominated from the national leadership in the fields of Biological Psychiatry and Neuroscience, and the College and its Annual Meeting are kept small by design (just over 1,000 members) in order to facilitate scientific exchange and career mentoring at the Meeting. Importantly, the ACNP is a venue at which the best scientists from academia, government, and industry gather to share, discuss, and debate their research. The College also plays a key role in mentoring early career clinicians and scientists in the field of neuropsychopharmacology via education, travel grants and providing individual mentors. Continue reading →
A Weekly Advocacy Message from Research!America: The appropriations dance begins. Are you joining in?
Dear Research Advocate:
For every step forward in the appropriations process, there tends to be a stumble backwards. The House has begun floor debate on HR 4660, the Commerce, Justice, Science, and Related Agencies Appropriations Act, 2015. The bill calls for a $237 million increase over FY 14 for the National Science Foundation (NSF), totaling $7.4 billion in budget authority. This increase (approximately 3%) is $150 million higher than the figure included in the President’s budget (a higher level that the President has endorsed) and is emblematic of the priority that should also be assigned to funding for the National Institutes of Health and our nation’s other research agencies.
Unfortunately, not all the news relating to NSF is good. Last night, the House Science Committee passed, on a party-line vote, legislation that authorizes a lower funding level for NSF than House appropriators allocate to it which can throw the funding process into disarray. The measure introduces political and ideological considerations into the allocation of science resources, a dangerous precedent that would inevitably stifle the progress that arises from free-flowing scientific exploration; and cuts another $50 million from social and behavioral sciences and economics (SBE) research. This is a perfect example of why scientists must advocate; they are uniquely able to explain the value of the research that is at risk and the consequences of tamping out scientific freedom. Continue reading →
By Margaret Foti, PhD, MD (h.c.), Chief Executive Officer, American Association for Cancer Research
Each year, the American Association for Cancer Research (AACR) is pleased to support and highlight May as National Cancer Research Month. Throughout this special month, the AACR celebrates the accomplishments of the scientific community, advocates for funding increases for the National Institutes of Health (NIH) and the National Cancer Institute (NCI), and spotlights the need for continued improvements in patient care.
There’s no doubt that tremendous progress has been made against cancer. People who have been diagnosed with cancer are living longer today than ever before. The five-year survival rate among adults who have had cancer (all cancers combined) is about 68 percent—an increase of 19 percent since 1975. For all childhood cancers combined, the five-year survival rate is 83 percent, an increase of 30 percent since 1975.
But much remains to be done. Almost 1,600 people in the United States die from cancer every day. The toll in medical costs, lost productivity, and human suffering is immense and will in fact grow as the “baby boomer” generation gets older. Continue reading →
Dear Research Advocate:
Today, Chairwoman Barbara Mikulski (D-MD) released the Senate’s 302(b) allocations, which were approved by the Appropriations Committee. As you know from last week, the House 302(b) allocation for the Labor-HHS subcommittee is approximately $1 billion less in fiscal year 2015 than it was in FY 14.The Senate’s allocation for FY 15 is roughly the same as it was in FY 14. The bottom line is that, as expected, we have our work cut out for us to achieve the increases needed for the National Institutes of Health (NIH) and our nation’s other health research agencies. Fortunately, Senator Mikulski and other leaders from both sides of the aisle understand the importance of investing in research to drive U.S. innovation. That doesn’t reduce advocates’ workload, but it makes success more than a longshot.
Earlier this week, both the House and the Senate Appropriations subcommittees on Agriculture considered bills that would fund the Food and Drug Administration (FDA) in FY 15. The House version calls for a $23 million increase (less than 1%) while the Senate version provides a $36 million increase. While appropriators deserve credit for finding additional dollars for the FDA given overall FY 15 budget constraints, this agency’s responsibility for protecting the very safety of Americans requires more dollars than this. Continue reading →
Letter to the editor by Research!America VP of Communications Suzanne Ffolkes published in The New York Times in response to article, “Labs Are Told to Start Including a Neglected Variable: Females” (May 14, 2014)
In addressing gender bias in biomedical and clinical research, it’s also important to close gaps in clinical trial participation among minorities to understand how different segments of the population respond to various treatments. When asked if they or someone in their family had ever participated in a trial, only 17 percent of Hispanics, 15 percent of African-Americans and 11 percent of Asian-Americans said yes in polling commissioned by Research!America, a nonprofit advocacy alliance.
This is primarily rooted in a history of distrust and lack of awareness, but attitudes appear to be evolving as more minorities express a willingness to participate in trials if recommended by a doctor or a health care professional.
Boosting enrollment among women and ethnic groups is critical to achieving better health outcomes for all Americans.
Election season is all about voters getting to know the candidates running for public office in their state. Through town hall and other meetings, articles and editorials, advertisements and debates, voters obtain information about each candidate that can inform their decision-making at the polls. Ask Your Candidates! (AYC!), a voter education initiative launched by Research!America and terrific partners representing just about every segment of the medical and health research ecosystem, helps connect voters and candidates on the issue of America’s faltering commitment to medical progress. And AYC! did just that last Friday during its first event, a non-partisan meet-and-greet in Atlanta where candidates for U.S. Senate from Georgia discussed the role Congress plays in fueling U.S. medical innovation. The event, called “American Medical Progress: A Conversation with Candidates,” focused on the roles of the private sector and government in the research pipeline that discovers and develops lifesaving medical innovations. All of the candidates were invited, and remarks were delivered by three candidates – Art Gardner (R), Derrick Grayson (R) and Steen Miles (D) – and campaign representatives for Phil Gingrey (R), Jack Kingston (R), Michelle Nunn (D) and Branko Radulovacki (D). David Perdue (R) provided a statement that was read at the event. Click here for a transcript of the candidates’ remarks.
Dear Research Advocate:
Congress continues to pay particular attention to – and make decisions bearing on – the pace of medical progress. To briefly count the ways:
The Senate Labor-HHS Appropriations subcommittee heard testimony yesterday from agency heads within HHS about the significance of health-related spending, including spending on medical and health research. Read our written testimony here.
Congressman Upton (R-MI-06), the Chair of the House Energy and Commerce Committee (which has jurisdiction over authorizing legislation for NIH, CDC, FDA and AHRQ) and Congresswoman Diana DeGette (D-CO-01), a member of the Committee, launched their 21st Century Cures initiative with a roundtable discussion focused on identifying what actions are necessary to maintain our nation’s place as the world’s innovation leader. While Reps. Upton and DeGette are champions of research who should be commended for working to strengthen U.S. medical innovation, there is always the risk that Congress will veer into micromanagement of NIH, stymie FDA’s efforts to ensure that private sector innovators are rewarded for ensuring the safety and efficacy of their medical advances, or “hold off” on providing the funding needed to accelerate medial progress until longer-term strategies are in place. Your participation can help make this effort a success, and the initiative has established an email address you can use if you wish to give input: firstname.lastname@example.org.
So that’s the good. Continue reading →
Remember that all day tomorrow, Tuesday May 6, is a social media Day of Action in conjunction with the Medical Progress NOW campaign. Join us on Twitter (#medprogressnow) and Facebook as advocates from around the nation ask Congress to focus on what can be done this year to accelerate medical progress, first and foremost by committing to a meaningful increase in funding for the National Institutes of Health in the FY15 appropriations process. Share personal stories, relevant data and compelling visuals to make the case that insufficient funding costs lives. Congress has the power to get NIH funding back on track. Help convince them to do it.
And please spread the word and share the link to the Day of Action toolkit with your professional and social networks for more information and sample messages.
By Ellen L. Woods, President of the American Foundation for Pharmaceutical Education
The American Foundation for Pharmaceutical Education (AFPE) is a national nonprofit organization located in Arlington, VA. AFPE was founded in 1942 and is the oldest pharmacy foundation in the nation. Now for more than 70 years, AFPE has provided fellowships, scholarships and grants to help educate thousands of the very best and brightest students in the pharmaceutical sciences in preparation for distinguished careers.
AFPE fellows engage in important, cutting-edge drug research that affects health outcomes in areas across the spectrum, from diabetes, heart disease, cancer, obesity, Alzheimer’s and other life-threatening conditions to medication adherence, arthritis, pregnancy, aging and smoking cessation. This sort of research lays the foundation for the health of generations to come.
The nation’s promising pharmaceutical scientists and their academic institutions have been significantly impacted by the diminished funding from federal agencies. AFPE and other nonprofit organizations attempt to fill that void. Students enrolled in pre-doctoral, PharmD and undergraduate programs in pharmacy look to AFPE to support their research endeavors. When not burdened by continuously seeking funding, researchers can more effectively spend time on research and innovation to improve public health. The investments AFPE makes in U.S. schools of pharmacy ultimately have a positive impact on patient health and fuel the economy.
AFPE is grateful for the unified voice and the partnership that Research!America provides to ensure that investment in research continues to keep pace with the need.
Dear Research Advocate:
In recognition of his many accomplishments as a champion for research, Research!America Chair and former Congressman John Edward Porter was honored by the National Academy of Sciences with the Public Welfare Medal, the Academy’s most prestigious award. This well-deserved acknowledgment of Porter’s tireless efforts to advance innovation and engage scientists in advocacy should motivate advocates to follow his lead and speak up about threats to our nation’s research ecosystem. Read our statement on the award ceremony here.
In his remarks, Mr. Porter noted that “political judgment should never be allowed to be substituted for scientific judgment.” This point was particularly well-timed as political attacks on science, particularly health services research, continue unabated.
A case study from Louisiana highlights the importance of health research in saving lives. Children’s Hospital in New Orleans had an outbreak of a deadly hospital-acquired infection, mucormycosis in 2008-09. In response to several outbreaks in recent years, the CDC launched new targeted initiatives to help hospitals and health departments share information with the public about hospital-acquired infections.This type of public health work, based on health services research findings, is critical to delivering high quality care, reducing medical errors and protecting patients. Continue reading →
Statement by Research!America Chief Operating Officer Michael Coburn on Public Welfare Medal Recipient John E. Porter
Research!America salutes Board of Directors Chair John Edward Porter, the 2014 recipient of the Public Welfare Medal from the National Academy of Sciences (NAS), the Academy’s most prestigious award to honor the extraordinary use of science for the public good. Porter’s leadership in advocacy for research has strengthened our nation’s global competitiveness in science and technology and advanced medical innovation to new heights. As chair of the House Appropriations Subcommittee on Labor, Health and Human Services, and Education, Porter demonstrated tremendous foresight, calling on policymakers to support robust investments in research to improve quality of life, combat debilitating and deadly diseases and stimulate private section innovation. With the doubling of the National Institutes of Health budget (FY99 – FY03), Porter helped usher in a new era of improved health and longevity for all Americans. A lifelong public servant, Porter continues to champion biomedical research in the U.S., urging researchers, patients and the public at large to become stronger advocates for science. As an inspirational force in the scientific community, Porter joins a distinguished group of medal recipients who leave a strong legacy for future generations.
Excerpt of an op-ed by Research!America President and CEO Mary Woolley published in the Huffington Post.
Like it or not, we’re in the midst of another election season. As candidates embark on endless rounds of campaign activities to win the hearts and minds of voters, it’s critical that they not neglect, by choice or lack of awareness, a key issue that has tremendous implications for the health and prosperity of Americans: medical research and innovation.
Our nation’s research enterprise has endured years of flat federal funding and, more recently, sequestration, the destructive across-the-board federal spending cuts that began in 2013, as well as policies that slow rather than propel forward the pace of commercial innovation and drug development. Research projects are coming to a halt, patients are being denied access to clinical trials, research institutions across the country have reduced their workforce, young scientists are fleeing to other careers or other countries and local businesses that flourish in a research-rich environment are scaling back operations.
Ironically, given today’s unprecedented scientific opportunity, elected officials have not provided the resources it takes to capitalize on monies previously invested, forcing innovators to delay or abandon studies that could lead to new therapies and cures for insidious health threats such as Alzheimer’s, cancer and obesity. During this election season, as candidates answer questions and take positions intended to boost their chances at the polls, it is up to us who care about medical progress to ask candidates whether they perceive medical research as a top national priority.
Read the full op-ed here.