Category Archives: Research Investment/Funding

World AIDS Day 2014: Focus, Partner, Achieve: An AIDS-free Generation

World AIDS day, commemorated each year on Dec 1, aims to raise awareness about the virus, encourage advocates to redouble efforts to fight the epidemic, and remember those who have died and continue to suffer from the disease.

Photo credit: cdc.gov

Photo credit: cdc.gov

The 2014 World AIDS day theme “Focus, Partner, Achieve: An AIDS-free Generation,” speaks to how combined efforts and collaborations can bring us closer to a cure or vaccine. For example, public and private-sector funded research led to the development of Highly Active Antiretroviral Therapy (HAART), which revolutionized the battle against HIV/AIDS according to Research!America’s HIV/AIDS fact sheet.

Medical research has played a critical role in reducing the risk of transmission and has led to new drugs that have transformed HIV/AIDS from a fatal to a chronic illness for millions worldwide. Patients like Maria Davis, professional entertainer and HIV/AIDS advocate, has benefited from advances in HIV/AIDS treatments.

Research!America member, amfAR, The Foundation for AIDS research and The Centers for Disease Control and Prevention are raising awareness on World AIDS Day by providing up-to-date resources and information describing the human and economic impact of HIV/AIDS. In FY14, U.S. federal funding to combat HIV/AIDS here and abroad and assist those affected by the disease totaled $29.5 billion, but more resources and funding are needed to tackle this global epidemic. Tell Congress that we need more funding for HIV/AIDS research today!

To find out more about the events happening on Dec. 1, visit http://aids.gov/

Advertisements

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 →

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 →

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 →

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: American values at stake

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.

 # # #

A Weekly Advocacy Message from Research!America: 5 by June 5

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 →

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 →

Working Together for Research

By Margaret Foti, PhD, MD (h.c.), Chief Executive Officer, American Association for Cancer Research

fotiEach 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 →

Informative Conversations Highlight Ask Your Candidates! Event in Atlanta

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.

Continue reading →