Tag Archives: medical research

A Weekly Advocacy Message from Mary Woolley: Do we still value discovery?

Dear Research Advocate:

The accomplishments of the recently announced 2014 Nobel laureates in the fields of physiology or medicine, and chemistry are breath-taking. Whether identifying the mechanisms by which the mind comprehends space and place, or enhancing ability to observe how diseases develop, these scientists have, over time, enabled progress that couldn’t have been determined by fiat. Science serves us all via an iterative discovery process, which is why policymakers are skating on thin ice when they censor research that doesn’t promise results that serve a date or purpose certain. Centuries ago, European rulers launched many ventures before eventually discovering the New World — not every journey was a success, nor was everything discovered anticipated in advance. It is ever thus as we continue to explore new worlds, since even as discoveries open new vistas, plenty of surprises occur. Indeed, some new worlds are not as “new” as first thought — to wit, October includes a holiday known to some as Columbus Day and to others as Indigenous Peoples Day. Seeing things in a new light doesn’t mean we should shut down discovery because some aspects of it make us uneasy or call our values into question.

Ebola has called our values into question, to be sure. Do we need a shared sense of existential threat like Ebola to arrive on our doorstep — a “Sputnik moment,” if you will — before Americans mobilize to demand more support for U.S. science?  Although there is every reason to believe that the world can contain Ebola — we have contained all previous Ebola outbreaks — there is no denying that we are not as well positioned as we should be to face down this challenge, due to years of under-investment in research and public health, including research on diseases that seem rare and/or remote.  My op-ed in Roll Call this week drives home this point, calling on decision-makers to act for NIH, CDC, and, fundamentally, for forward-thinking instead of reactive policies. Continue reading →

Medical research key issue for elections

Letter to the editor by Research!America President and CEO Mary Woolley published in the Omaha World Herald.

mary-woolley-webThis is in response to a Midlands Voices essay (Finish the job, fund medical research, Sept. 25). The authors’ articulate case for robust and sustained investments in lifesaving research represents the interests of all Americans who await cures, as well as better treatments and prevention of Alzheimer’s, autism, cancer and diabetes and more.

Many Americans believe that elected officials are not doing enough to combat deadly diseases, as they repeatedly cut funding and fail to enact policies that stimulate rather than stifle research. Two-thirds of our fellow citizens say it’s important for candidates running for office to assign a high priority to funding medical research, according to polling commissioned by Research!America.

With the midterm elections approaching, now is the right time to ask congressional candidates whether they would set a high priority on research conducted at the University of Nebraska Medical Center, Creighton University School of Medicine and research institutions around the country. Ask Your Candidates, a national voter education initiative, gives voters in Nebraska a simple way to engage candidates and learn more about their positions on assuring medical progress.

Breast Cancer Doesn’t Know It’s October

Excerpt of an op-ed by Susan G. Komen President and CEO Judith A. Salerno published in The Huffington Post.

SalernoAs I conducted numerous media interviews about the continued need for research, education, treatment support, and advocacy, it occurred to me that it would be great if we were talking about breast cancer like this every day of the year.

It’s really quite simple. Breast cancer doesn’t know (and doesn’t care) that it’s October, because breast cancer is diagnosed and kills women and men every day of every month of every year. Every 19 seconds, somewhere in the world, a person has a new diagnosis of breast cancer. In the U.S., a woman is diagnosed every two minutes, and one dies every 13 minutes from this terrible disease.

Those are shocking numbers, and behind every one of those numbers is a compelling story. A mother who by sheer will lived long enough to watch a child graduate from high school. A daughter taken too soon from parents who would have given anything to switch places with her. A father carrying a gene mutation that passed breast cancer on to his daughters. A woman without money, without insurance, terrified to seek help until the tumor was breaking through her skin.

I think of these stories in October, and November, and June and April, as does everyone in the breast cancer movement. As much joy as we take in celebrating the women who are cancer-free; as much pride as we take in funding leading research; as much effort as we put into helping the most vulnerable people in our communities, we know that we will be continuing this work until we can shut off the lights and go home, because we’ve cured and prevented this disease.

Read the full op-ed here.

A Weekly Advocacy Message from Mary Woolley: Nobel prizes this year and in the future

Dear Research Advocate:

The 2014 Nobel Laureates will be announced next week. I hope you will consider amplifying the news via social media, op-eds and letters to the editor. The Nobel prize is so iconic that it provides an entrée to the broader public, one that can be used to connect the dots between the process of scientific discovery, the power of ingenuity, and the role of science in human progress. And if a winner has been funded by a U.S. science agency or company, all the better from an advocacy perspective!

In the years ahead, will the United States be home to more Nobel Laureates in the sciences, or will those honors go to scientists in countries that place a greater emphasis on research and innovation? This chart compares the R&D commitment of 19 Organisation for Economic Co-operation and Development (OECD) nations, the metric being R&D as a percentage of GDP. The next time you are speaking with a member of Congress or his/her staff, you may want to mention that, in relative terms, Estonia assigns a higher priority to R&D than does the United States. Bravo to Estonia, but do we as a nation truly expect to remain a global powerhouse as we drain our own power source? Continue reading →

Fear of vision loss top concern among Americans across all racial and ethnic groups

Stagnant funding could threaten progress in eye research

AEVR eventAmerica’s minority populations are united in the view that not only is eye and vision research very important and needs to be a national priority, but many feel that current federal funding ($2.10 per person, per year) is not enough and should be increased. This may stem from the evidence that most minority populations recognize to some degree that individuals have different risks of eye disease depending on their ethnic heritage.

And while these Americans rate losing their eyesight as having the greatest impact on their daily life and having a significant impact on their independence, productivity and overall quality of life, 50 percent of Americans who suffer from an eye-related disease are not aware of it.

These statics and more were the topic of discussion at a press event in Washington, D.C., today, where members of the media and leaders in the eye and vision research community gathered to interact with a panel of experts and weigh in on the topic of The Public’s Attitudes about the Health and Economic Impact of Vision Loss and Eye Disease. Continue reading →

Promising Research Can’t Stall for Lack of Funding

Excerpt of a joint op-ed by Research!America President and CEO Mary Woolley and Susan G. Komen President and CEO Judith A. Salerno published in The Huffington Post.

MW & JSFebruary 23, 1954, was a milestone in the history of American medical research. That day, children at Arsenal Elementary School in Pittsburgh lined up to receive injections of a promising vaccine. Within months, schoolchildren all over the country were doing the same, and polio was on its way to being eradicated in the United States. The disease, which had killed and paralyzed children and adults alike, would no longer be a threat.

This remarkable achievement would not have been possible without the work of Dr. Jonas Salk and his team at the University of Pittsburgh, and — equally significant — grant support from the National Foundation for Infantile Paralysis, now known as March of Dimes. Policymakers played a role, too, when the Polio Vaccine Assistance Act of 1955 made possible federal grants to the states for purchase of the vaccine and for the costs of planning and conducting vaccination programs.

A generation or two later, millions of individuals worldwide benefited from another major medical breakthrough. Remember when being diagnosed as HIV-positive was an automatic death sentence in the 1980s? Accelerated research supported by the National Institutes of Health (NIH), in partnership with Burroughs Wellcome and Duke University, resulted in the development of AZT, the first drug that slowed the replication of HIV. By 1987, the drug won FDA approval and marked the first major treatment in extending the lives of HIV/AIDS patients. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Happenings in and out of Washington

Dear Research Advocate:

I am writing a day early this week since all of us at Research!America will be engaged in our programs tomorrow. If you haven’t registered for the National Health Research Forum, there is still time to join us! More details here.

Congress is back in town. The House will soon consider a simple, short-term continuing resolution (CR) to fund the government through early December. (Nobody wants a repeat of last year’s government shutdown at the beginning of the new fiscal year, October 1.) To offset funding requested by the Administration to help meet the Ebola crisis, as well as to adjust for certain other “anomalies,” the CR bill includes a 0.0556% across-the-board spending cut. There may be modest negotiations, but this or a very similar CR is likely to easily pass both Houses shortly. After the election, it will be important to vocally support the efforts of Appropriations Committee Chairs Mikulski (D-Md.) and Rogers (R-Ky.-05) as they seek to complete the FY15 appropriations process with omnibus legislation before the 113th Congress adjourns in December. More on this in future letters. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Coming Soon: Straight Talk

Dear Research Advocate:

Just when you thought that there is no good news coming from Washington, it looks as though we have a new congressional champion for research. Senator Cory Booker (D-NJ) penned a most welcome op-ed in the Asbury Park Press this week. We trust this is just one way he works to convince his constituents and his fellow lawmakers of the high priority the nation should be assigning to research. Championing research can be a heavy lift, since it’s no secret that some policymakers don’t see why government should have any role in R&D. A recent article in Forbes pushes back. As part of the BRAIN Initiative, the Defense Advanced Research Projects Agency (DARPA) is researching a potential breakthrough in healing. It’s a long-shot, but DARPA is known for supporting long shots that have made major contributions to our lives. If the featured research proves successful, it will revolutionize the ability to help wounded warriors – and all of us – heal. It will easily pay for itself many times over. (Just as the GPS – a long-shot, expensive product of federally-funded research – revolutionized our national defense capabilities and has paid for itself over and over again in commercial application. That’s what federally funded research does. It goes where the free market can’t and mines new territory in science and technology. The private sector takes it from there.) The House and Senate defense appropriations bills would both cut funding for DOD-funded R&D. Has shooting ourselves in the foot become a policymaking imperative? Continue reading →

A Weekly Advocacy Message from Mary Woolley: Labor Day Weekend Check List

Dear Research Advocate:

Labor Day might mean a last chance for R&R, but it also means that election day is right around the corner. It only takes a minute to send a quick email or direct a tweet to candidates. Think of them as candidates for the role of R&D champion! And take a moment to share this call to action with your colleagues, friends and family. The power of social media is undeniable.

aycbeachThere are only 10 days until Congress returns to Washington to face a lengthy to-do list, which is unlikely to shrink much before the November elections. Appropriations action for FY15 has stalled out, with new battle lines being drawn over the time span for a Continuing Resolution (CR). Whatever the length, a CR is no more a solution than is kicking the can down the road on tax provisions. The medical device tax remains unchanged despite its intuitively counterproductive effect on the capital needed to develop lifesaving medical technologies, not to mention the jobs and new businesses that go with that development.  In addition, the R&D tax credit has not been renewed, let alone enhanced or made permanent. If we want our GDP to grow, our tax policies should be aligned with that goal. As things stand, if we don’t figure out how to boost our economy, China’s GDP is projected to surpass ours by 2017.  Continue reading →

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.

 

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.

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 →