A Weekly Advocacy Message from Mary Woolley: Deep thoughts occasioned by ice buckets

Dear Research Advocate: 
 
You have by now heard about the ALS “ice bucket” challenge (show support for ALS research by dumping a bucket of ice water over your head and/or writing a check for $100 to the ALS Association, then challenge three others to do the same.)  Whether viewed as a welcome late-summer distraction from imponderables like conflict in the Middle East, on-going clashes in Ferguson, Mo., or the mounting death toll from Ebola, or, rather, as the emergence of a new kind of advocacy similar to what produced the walks, runs and bike-rides for research that are ubiquitous today, the “ice bucket challenge” is worthy of attention.

I think that public attention to the “ice bucket” challenge is not only good for ALS research (and all the patients and their families who cope with this devastating illness), but is an opportunity to engage a newly-interested sector of the public, including all those members of Congress who have accepted the challenge. Think about those freely written $100 checks and consider that the NIH budget buys only about $100 worth of medical research per American, per year, on all diseases as well as vital basic research.  Add to that other federal agencies’ budgets, the private sectors’ expenditures (industry, academia, philanthropy, patient groups) and we can maybe triple that amount (generously computed, and including development along with research). Is that enough to assure better health and prosperity for our nation? I’d say not even close.  Not when brilliant young people are discouraged to the point of leaving the country if they want to work in science;  not when other nations are poised to take over U.S. leadership in R&D; not when we are looking at ALS heartbreak and huge federal debt associated with the costs of Alzheimer’s, as just two crises we should be focused on intently, with all the resources we can bring to bear.  Continue reading →

Federal Health Agencies Ramp Up Efforts to Fight Ebola

Colorized transmission electron micrograph revealing some of the ultrastructural morphology displayed by an Ebola virus virion. Photo credit: Frederick A. Murphy

The Centers for Disease Control and Prevention (CDC) sent more than 50 disease detectives and other highly trained experts to West Africa to battle Ebola. While here in the U.S., more than 350 CDC staff are working on logistics, communications, analytics, management and other functions to support the response 24/7 at CDC’s Emergency Operations Center.“We are fulfilling our promise to the people of West Africa, Americans, and the world, that CDC would quickly ramp up its efforts to help bring the worst Ebola outbreak in history under control,” said CDC Director Tom Frieden, MD, MPH.  “We know how to stop Ebola.  It won’t be easy or fast, but working together with our U.S. and international partners and country leadership, together we are doing it.” Read more here.

Meanwhile, researchers at the National Institutes of Health (NIH) and the National Institute of Allergy and Infectious Diseases (NIAID) are studying Ebola and seeking better ways to diagnose and treat the disease. In 2013, the NIAID reported spending $42.49 million on Ebola research. Public-private partnerships are critical to containing and preventing such deadly outbreaks. The NIAID is collaborating with Okairos, a biotech company, to develop Ebola vaccines. The NIH is working with the drugmaker Mapp Biopharmaceutical to scale up production of its Ebola drug Zmapp and partnering with BioCryst to advance the company’s experimental treatments. 

Sustained and robust federal funding is needed to respond to global health threats, and to support the development of vaccines to combat Ebola and other deadly diseases. Policymakers must assign a higher priority to medical research to ensure the health and wellness of Americans.

Click here to urge your representatives to support increased funding for federal health agencies in FY15.

 

A Weekly Advocacy Message from Mary Woolley: Can we put a dent in the costly toll of suicide?

Dear Research Advocate: 
 
The loss of American Icon Robin Williams has riveted national attention on suicide, one of the 10 most common causes of death in the United States. Today, we are releasing our updated fact sheet on suicide that you can use when meeting with lawmakers and educating others about the impact research can have. Efforts to prevent suicide rightly draw on research findings. But progress has been painfully slow, stymied by serious gaps – partly due to severely limited funding – in the basic research base that precedes private sector development, and stymied by the equivalent of handcuffs placed on social science research.

The notion promulgated by some in the Congress that social sciences research doesn’t add enough value to merit federal funding is not just unfounded, it’s holding us back. Social sciences research saves lives. Case in point: behavioral research guided the development of a suicide intervention that was pilot tested in schools in Georgia and Connecticut and resulted in a 40% reduction in attempted suicides. It has since been implemented in schools across the country. This is just one example of social sciences research at work.

Research moves faster when patient advocates engage. This is the history of the nation’s commitment to defeating polio, to ramping up HIV/AIDS research, to prioritizing breast cancer research and women’s health research overall. Writing in the New Yorker last month, Seth Mnookin described the impact that “dedicated … well-informed families” can have in pushing progress. In his responsive letter to the editor, Peter L. Saltonstall, CEO of the National Organization for Rare Disorders, focused on the use of social media by patient groups to establish global registries, taking full advantage of abilities we didn’t have just a few years ago, and in so doing, saving lives. But there is another message here. The research community must work more closely with patient advocates in order to drive medical innovation. As one of the researchers in the Mnookin article said, “Gone are the days when we could just say, ‘We’re a cloistered community of researchers, and we alone know how to do this.’” Continue reading →

How To Help Accelerate Medical Progress In America

Excerpt of an article published in the Imperial Valley News.

AYCEach year in the United States, nearly 16,000 kids are diagnosed with cancer. And on any given day, as many as 5 million Americans are living with Alzheimer’s disease. Beyond its debilitating symptoms, the death rate for Alzheimer’s is on the rise.

But there are steps you can take to protect your family from these potentially devastating medical conditions.

One idea that may come as a surprise to many Americans is to contact your congressional representatives and the candidates for their seats.

That’s the suggestion of a national, nonpartisan, voter education initiative called “Ask Your Candidates!” designed to empower voters to talk to candidates about the future of medical progress in the United States. Congress plays a key role in influencing the future of lifesaving research. Many voters are asking candidates if, once elected, they will vote to increase federal funding for medical research and support policies that spur innovation.

The initiative helps voters engage candidates on social media and through local events, grassroots, advertising and other interactive projects.

Read the full article here.

Communicating Your Science to the Non-Expert

On July 23, the Society for Neuroscience held  its first interactive webinar titled “Communicating Your Science to the Non-Expert.” During the webinar, speakers discussed how to effectively describe the health and economic impact of your research to a nonscientific audience including policymakers and the media. The presentation covers the basics of crafting an elevator speech and a question and answer session with scientists.

Watch the entire recording online or one chapter at a time:

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A Weekly Advocacy Message from Mary Woolley: Behind the headlines

Dear Research Advocate:

News of the rising death toll from the Ebola outbreak in West Africa has captured attention in the U.S. With the arrival of two American patients for treatment in Atlanta earlier this week, we are reminded of our truly global society and the importance of a nimble research ecosystem. Complex global disease threats exemplify the importance of both the public and private sectors in protecting our health.  Why, then, are we not fully funding the NIH, CDC and FDA to ensure the  robust public health infrastructure needed to respond to population-wide threats, to pursue vaccine development and other prevention strategies, and to develop new treatment options for Ebola and a host of other threats?  Why have we not truly empowered industry and public-private partnerships with a regulatory and tax environment worthy of the 21st century?  Readers of these letters don’t need to be persuaded, but can be the persuaders of those who are resisting. Persistent, ill-informed arguments include: we can’t afford more federal support, when in fact we can’t afford the lack of it; our nation’s tax structure need not be competitive with that of peer nations; or industry can act alone.  Our job is to effectively refute them.

Speaking of Africa, the Africa Summit held here in Washington, D.C., earlier this week provided another sort of attention to that continent, which has a swiftly emerging middle class, the youngest population in the world and which, by 2050, will have a population twice the size of China!  Those who are stuck in the “aid” model for assuring that Africa realizes its potential — including its potential as a market — may not realize that there is a crying need for robust science, technology and STEM education as a component of African development if we expect to see self-sustaining economies.  Read more in a pre-Summit op-ed published in last week’s New York Times. Continue reading →

Member Spotlight: University of Southern California School of Social Work

By Marilyn Flynn, dean of USC School of Social Work

FlynnAs one of the nation’s first schools of social work, the USC School of Social Work is widely recognized as a top-tier graduate program that offers rigorous career preparation for academic, policy, and practice leaders and provides an innovative and supportive environment for research on critical social problems.

Researchers at the school are dedicated to exploring the social and behavioral determinants of physical and mental health issues, in addition to translating research findings into real-world strategies to improve the health and well-being of individuals and society. Because medical research is a critical component of this interdisciplinary pursuit, our scientists naturally embrace the mission of Research!America to improve awareness and build public support for research seeking to cure, treat, and prevent physical and mental disorders.

Our Hamovitch Center for Science in the Human Services was the first endowed center for interdisciplinary social work research at any university. A leader in the evidence-based decision-making and practice movement, the center continues to expand with the recruitment of nationally recognized faculty members and newly established research cores and institutes in aging; behavior, health, and society; child development and children’s services; homelessness, housing, and social environment; management, organizations, and policy transformation; military; and serious mental illness. Continue reading →

A Weekly Advocacy Message from Mary Woolley: No recess for advocates!

Dear Research Advocate:

As I write, most members of Congress are on the way home for August recess. As anticipated, no further action has been taken on the appropriations front – or much else, for that matter. In terms of issues we care about: no movement on tax reform, which means no much-needed enhancement of the research and development tax credit; no repeal of the medical device tax; and no final passage of Fiscal Year 2015 appropriations bills.  In upcoming letters I will talk in more detail about Capitol Hill-focused advocacy strategies through the election and beyond.

In the absence of legislative action, some attention – in a bipartisan manner – is being given to research for health. In previous letters, I’ve talked about an effort spearheaded by House Energy and Commerce Chairman Fred Upton (R-MI-06) and Ranking Member Diana Degette (D-CO-01) called the 21st Century Cures Initiative that will remain active over the recess. Public input is being sought as central to this initiative. The truly engaged and whip-smart congressional staff coordinating this initiative have indicated that they would welcome your thoughts at any time. They are particularly interested in the National Institutes of Health, the Food and Drug Administration and public-private partnerships. If you believe the key to faster medical progress is increased funding, tell them. If you feel that bottlenecks in the clinical trials process are the priority concern, tell them. This is not only an opportunity to seed positive change; it is an opportunity to elevate the priority of medical progress going forward. When you think about it, the volume of comments is nearly as important as their content. Issues with an army behind them get attention. To submit comments, e-mail cures@mail.house.gov. Continue reading →

Support NIH

Ask Your Senators to Support the Accelerating Biomedical Research Act

Funding to the National Institutes of Health (NIH) has remained flat in recent years, and uncertainty is growing over the ability of universities and other research institutions to conduct the noncommercial medical research underlying new preventative measures, diagnostic tools, treatments, and cures. In response to significant concerns about the erosion of NIH’s purchasing power, Senator Tom Harkin (D-IA) has introduced legislation, the Advancing Biomedical Research Act, that empowers Congress to provide up to 10% increases in NIH funding for FY 2015 and FY 2016, and up to 5% increases through 2021. These increases are more than justified by the scientific opportunity unleashed when the human genome was sequenced. And that’s just one of the developments that has set the stage for accelerated medical progress. We need to conquer Alzheimer’s Disease, cancer, Parkinson’s Disease, and other deadly and disabling health threats…and we can. Show Congress that you support Senator Harkin’s efforts to fuel medical progress. Urge the senators who represent you to support the Accelerating Biomedical Research Act now!

Take action.

A Weekly Advocacy Message from Mary Woolley: A long letter with timely news

Dear Research Advocate:

Today, Senator Tom Harkin (D-IA) — one of the most effective and dedicated champions of medical and health research ever to serve in public office — introduced major new legislation, the Accelerate Biomedical Research Act.  This visionary legislation would increase the budget caps in order to boost National Institutes of Health (NIH) funding to $46.2 billion by FY 2021, a strategy for restoring NIH purchasing power without cutting into funding for other national priorities. You can view my statement on the legislation here and our thank you letter to the Senator here.  It would be terrific if you would write a letter of support for the legislation and send a message encouraging your Senator to sign on.

There’s more good news to share! The Senate Labor-H bill and accompanying report language were released today.  We are grateful to Appropriations Committee Chairwoman Barbara Mikulski (D-MD) and Labor-H Subcommittee Chairman Harkin for helping to conceive of, and agreeing to include, report language to fund a Blue Ribbon Commission on science literacy and public appreciation of science. We’re pleased to have played a role in making this happen but every science advocate deserves credit when federal leaders take a step like this.

In terms of FY15 funding, you may recall that the Senate Labor-H subcommittee proposed NIH be funded at $30.5 billion, a $605.7 million increase, or about a 2% bump over FY14 levels.  The proposed measure also funds CDC at nearly $6 billion, a 3.3% increase from FY14 and funds AHRQ at $373.3 million, a mere .6% increase from FY14.  With the appropriations momentum stalled, rumors are floating around the Hill that the House will soon consider a Continuing Resolution or CR (extending current spending levels) through the election and potentially into December.  Continue reading →

Statement by Research!America President and CEO Mary Woolley on the Accelerate Biomedical Research Act

Research!America applauds Senator Tom Harkin for taking bold, decisive action to heal fissures in our nation’s research pipeline with legislation that will strengthen the National Institutes of Health (NIH) budget over the next six years. The Accelerate Biomedical Research Act will establish a pathway for sustained growth in the NIH budget. That budget has remained virtually stagnant over the last decade, jeopardizing promising research to combat disease and deflating the aspirations of early career scientists. NIH-funded research fuels the development of lifesaving therapies and treatments, and creates opportunities for public-private partnerships to better understand Alzheimer’s, cancer, heart disease and other major health threats here and abroad.

Senator Harkin and other congressional leaders recognize the potential of innovative research, but it is Senator Harkin who is taking the lead at a time when too many elected officials appear to have taken their eyes off the ball with our global leadership in science and technology at risk. China and other countries are aggressively increasing their research and development investments, luring scientists to their shores and challenging our dominance in medical research and innovation. According to polling commissioned by Research!America, a majority of Americans are skeptical that the U.S. will maintain its pre-eminence in science by the year 2020, and many policy experts agree. We urge Congress to support the Accelerate Biomedical Research Act to improve the health of Americans and ensure our global competitiveness.

Medical Research: It’s about you and me

collage fact sheetResearch!America’s newest fact sheet series highlights the personal stories of medical research and the importance of increasing the NIH budget in FY15. We hope you will share these fact sheets with your representatives or congressional candidates, or take it with you on Hill or in-district visits. No one who reads these stories can doubt the significance of medical progress. A stronger investment in research is needed now more than ever!

Here are their stories:

What new discoveries are we delaying and missing when we slow the pace of medical and health research?

We’ve made progress. But the funding to sustain it is eroding.

A Weekly Advocacy Message from Mary Woolley: Will research have every opportunity to conquer Alzheimer’s?

Dear Research Advocate:

We are finally seeing action to address the surfeit of regulations placed on the research community. Accountability is essential, but it isn’t a function of how thick the red tape is! The Research and Development Efficiency Act, HR 5056, passed the House this week and is pending before the Senate Committee on Commerce, Science and Transportation.

This is but one example of the direct effect that your legislators can have on medical research. Do you know what your candidates will do to advance medical progress if elected on November 4th? Our Ask Your Candidates! national voter education initiative highlights the views of candidates. We are counting on you to help us reach more candidates. Click www.askyourcandidates.org to see if your candidates have responded—if so, say thank you (Why say thank you?  Because potential champions need to know there is an army of supporters standing behind them!)—if not, ask them to weigh in.

Why should voters and candidates care about medical progress? I can answer that in one word: Alzheimer’s. This disabling and breathtakingly expensive illness is in the news this week as scientists announce new research findings at the Alzheimer’s International Conference in Copenhagen.  A major randomized prevention trial showed that a behavioral intervention featuring changes in diet and exercise produced significant cognitive improvement in Alzheimer’s patients. Continue reading →

New Opportunities in the Changing Landscape of Prevention

Excerpt of article by Derek Yach, MBChB, MPH, The Vitality Institute, The Vitality Group, LLC, New York, New York and Chris Calitz, MPP, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland published in The Journal of the American Medical Association (JAMA).

The focus of medical research has historically been on curative medicine, yielding better drugs, medical devices, and clinical procedures. Prevention science—the systematic application of scientific methods to the causes and prevention of diseases in populations—has yet to receive the necessary investment and support required to reduce the growing burden of largely preventable noncommunicable diseases (NCDs).

Human and Economic Burdens of Disease

Recent assessments of the burden of risk and disease found that morbidity and chronic disability account for nearly half of the US health burden.Despite the largest per capita health expenditure of all industrialized nations, the United States has fallen behind peer countries in terms of improvements in population health. Americans reach age 50 with a less favorable cardiovascular risk profile, lung disease is more prevalent and associated with higher mortality, and the death rate from heart disease is the second highest among peer countries. Leading NCD risk factors are unhealthy diets, tobacco smoking, high body mass index, high blood pressure, high fasting plasma glucose levels, physical inactivity, and alcohol use.Many of these risks are amenable to preventive interventions based on behavior change, yet comprehensive action by development sectors across the economy to disseminate evidence-based interventions targeting these modifiable risks is inadequate. Furthermore, knowledge about effective prevention interventions for mental illness and musculoskeletal diseases is limited even as their contribution to chronic disability increases.

Noncommunicable diseases have been cited as major contributors to rising health care costs, which the Congressional Budget Office (CBO) projects will be the primary driver of national debt over the next 4 decades. The greatest increase in health care spending between 2000 and 2011 was attributable to drugs, medical devices, and hospital care, with the cost of treating NCDs estimated to exceed 80% of annual health care expenditure, whereas 3% was spent on public health and disease prevention programs.The National Institutes of Health estimates that 20% of its $30 billion annual budget is allocated to prevention; however, less than 10% is spent on human behavioral interventions that target the major modifiable risk factors.More investment in prevention science could lead to greater health gains at lower cost.

Read the full article here.

Research!America’s response to the Yach and Calitz article in JAMA:

The commentary by Derek Yach and Chris Calitz should be required reading for every federal policy maker.  Preventing disease is the best case scenario, not only for patients, but for taxpayers and the economy.  That’s because reducing the incidence of disease is more than a one-time cost-saving strategy; it actually bends the cost curve and helps individuals lead long, productive lives.  Yet the Prevention and Public Health Fund, which allocates grants to states to reduce the prevalence of NCDs,  has been a perennial target of lawmakers who seek every opportunity to defund it and prevention science as a whole continues to be a low national priority. That’s where advocates come in.  Prevention science is not going to flourish until Washington comprehends the return on investment.  Fighting for prevention science is not just right, it is essential.

Invest in NIH research

Excerpt of an op-ed by Society for Neuroscience Early Career Science Policy Fellow Matthew J. Robson, PhD, published in The Tennessean.

robson0705The United States has historically been a consistent, international force of innovation and advancement in biomedical research. Such research is not possible without federal funding of the National Institutes of Health (NIH), an agency within the Department of Health and Human Services.

Although the NIH supports basic biomedical research aimed at a greater understanding of the causes of disease and the improved health of all Americans, relatively few understand the scope of the accomplishments of this agency.

Research that depends upon NIH funding has contributed to improved treatments for many ailments, including asthma; brought advances in imaging technologies, including MRI; nearly eliminated transmission of HIV between mother and child; and more than halved the incidence of mortality from heart disease and stroke, two of the leading causes of death in America. Additionally, NIH funding was crucial in supporting the Human Genome Project, a project that has transformed the way that basic and clinical biomedical research is conducted. These advances in medicine have saved countless lives across the globe. These medical breakthroughs stem from our country’s persistent and sustained investment in basic biomedical research through NIH funding that is allocated by Congress.

Adequate levels of funding for the NIH are crucial for not only future medical advancements, but also the economic health of the United States. Currently, biomedical research results in over $2 of economic activity for every $1 of taxpayer investment. Biomedical research funding is clearly not a “bridge to nowhere,” as it makes up less than 1 percent of the entire federal budget and represents a true investment with real quantifiable returns. NIH-funded research is responsible for nearly half a million high-quality jobs within the United States, jobs that result in economic prosperity in regions where this research activity occurs, including Tennessee. In Tennessee alone, it is estimated that NIH funding is responsible for employing nearly 11,000 people.

Read the full op-ed here.

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