Tag Archives: health research

Americans Say Congress Should Take Swift Action to Assure Patients Benefit from Treatments and Cures for Diseases

New Poll Data Summary booklet reveals concerns among Americans about the pace of medical progress

AS15Majorities across the political spectrum say it is important that the new 114th Congress takes action on assuring the discovery, development and delivery of treatments and cures for diseases in the first 100 days of the legislative session (75% Democrats, 64% Republicans and 60% Independents), according to America Speaks, Volume 15, a compilation of public opinion polls commissioned by Research!America. As Congress considers numerous proposals in support of research, including the 21st Century Cures draft legislation aimed at speeding the delivery of lifesaving treatments to patients, it is notable to see public support in favor of accelerating medical progress.

“The new Congress has the opportunity to reinvigorate our research ecosystem and enact policies that will enable the private sector to expand innovation,” said Research!America Chair John Edward Porter. “Congress must work in a bipartisan fashion to realize the potential of promising studies to prevent and treat disease.”

An increasing percentage of Americans say the U.S. Food and Drug Administration (FDA) should move more quickly in order to get new treatments to patients, even if it means there may be risks. In 2015, 38% favor faster regulatory review, compared to 30% in 2013. Meanwhile, 25% say the FDA should act more slowly in order to reduce risk, even if it means patients may wait longer for treatments.  Another 19% are undecided on this question and 18% do not agree with either position.   Continue reading →

Statement by Research!America President and CEO Mary Woolley on President Obama’s Precision Medicine Initiative

President Obama’s Precision Medicine Initiative could potentially drive medical and health research into exciting, new territory as we advance efforts to develop the right treatments at the right time for individual patients. A laser-focus approach that takes into account a patient’s genetic profile, environment and lifestyle is critical to treat diseases such as cancer which afflicts millions of Americans. Only about a quarter of Americans believe the U.S. has the best health care system in the world, according to public opinion polling commissioned by Research!America. This initiative could help reverse both the perception and the reality with targeted treatments that will save lives and improve health care delivery.

This initiative is an important development for patients, physicians and researchers who will benefit from a stronger national commitment to precision medicine and for those who may yet take advantage of the new tools and therapies that will result from this effort. And many Americans are ready to support this endeavor. Polls show more than half say they are willing to share their personal health information to advance research and help improve patient care, and a majority believe that elected officials should listen to advice from scientists. This initiative is a major step towards building a stronger public-private partnership to leverage health data and technology to accelerate the discovery and development of tailored treatments for patients.  Continue reading →

Statement by Research!America President and CEO Mary Woolley on FY15 Cromnibus Spending Bill

The tiny increases included in the “Cromnibus” bill for the National Institutes of Health (NIH) and our nation’s other health research agencies are just that. The underwhelming support for the NIH, the Centers for Disease Control and Prevention, the National Science Foundation and the Food and Drug Administration following years of stagnant funding and budget cuts begs the question – how low can we go, given health threats the likes of which stand to bankrupt the nation?  And the decision to flat-fund the Agency for Healthcare Research and Quality does not provide what it takes to reduce the much-complained of inefficiencies in our health care system. The pain and economic drain of one disease alone – Alzheimer’s – is not going to be effectively confronted without stronger investments in research. Every American who wants to see our nation overcome health threats, create jobs and shore up our economy for sustained prosperity must make it clear to the next Congress that it can and must do more, making research and innovation a strategic national priority.

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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.

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 →

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 →

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 Research!America: Flat won’t get the job done

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 →

A Weekly Advocacy Message from Research!America: Rallying more defenders of science

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 →

A Weekly Advocacy Message from Research!America: First things first

Dear Research Advocate:

Washington isn’t ignoring research; far from it. Legislation was recently signed into law that allows appropriators to reallocate federal funding from the Republican and Democratic conventions to children’s health research; proposals have been introduced that could ultimately provide supplemental federal funding streams for the National Institutes of Health (NIH), the Centers of Disease Control and Prevention (CDC), and several other health research programs; and some Members of Congress have once again launched an attack on the National Science Foundation, demonizing certain projects as a means of casting doubt on scientific freedom. Unless you’re playing Jeopardy!, answers do not precede questions. Science without freedom is not science. More on that in future letters.

Washington isn’t ignoring research, but the spotlight keeps missing the most pressing question: Will Congress do something now to accelerate medical progress, or will FY15 mark another year of neglect?

The NIH budget is lower today than it was in 2012. How have we fallen so far behind? Is it no longer important to conquer diseases that kill children, to do more for wounded warriors, to stop devastating conditions like Alzheimer’s and cancer? Continue reading →

A Weekly Advocacy Message from Research!America: Are we on the right path to protecting innovation?

Dear Research Advocate:

The budget and appropriations process typically reveals stark differences in funding priorities among the two parties. And this year is no exception. House Budget Committee Ranking Member Chris Van Hollen (D-MD-08) introduced the Democrats’ 10-year budget plan this week, which stands apart from the Republican proposal introduced by Chairman Paul Ryan (R-WI-01) most notably by ending sequestration. The Ryan budget, which won House approval today, is on its way to the Senate but is considered dead on arrival. Note that there’s still time to urge your Members of Congress to support medical and health research as this year’s appropriations process continues!

Teen “whiz kids” profiled in the latest issue of People magazine personify the future of science and medical innovation. Among them, Jack Andraka, who at age 15, created an affordable diagnostic test for pancreatic cancer that provides results in five minutes. He faced tremendous obstacles securing funding for his breakthrough innovation, a problem we see all too often in medical and health research. Such ingenuity propels our best and brightest to take risks but the funding to support their revolutionary ideas is not within their grasp.

Discussing these innovative projects with candidates and elected officials is key to elevating science and technology in the national conversation. In Research!America’s newly released poll data summary booklet, America Speaks, Volume 14, two-thirds of Americans (66%) say it’s important for candidates running for office to assign a high priority to funding medical research. Now is the time to ask future and returning Members of Congress if they believe that medical progress is a high national priority as part of our new national voter education initiative Ask Your Candidates!, which was formally launched this week. More details about America Speaks and the campaign can be found here. As the number of lawmakers with a background in science diminishes, it’s more important than ever to engage with your representatives. Michael S. Lubell writes in Roll Call that if we don’t elect a new scientist in the upcoming elections, it will mark a six-year decline from five to two Members of Congress who have a PhD in a natural science.

National Public Health Week, which wraps up tomorrow, provides another opportunity to engage policy makers about the benefits of health research. Don’t miss our recent blog post celebrating public health — an often underappreciated facet of our research ecosystem.

A new video highlighting backstage interviews with our 2014 Advocacy Award Winners illustrates the passion and drive of these extraordinary leaders who have contributed greatly to medical progress. We encourage you to nominate individuals and organizations whose leadership efforts have been notably effective in advancing our nation’s commitment to research for the 2015 Advocacy Awards.

As you’re aware, members of Research!America’s management team will guest-author this letter in Mary’s absence. This week’s author is Research!America’s vice president of communications, Suzanne Ffolkes.

Sincerely,

Suzanne Ffolkes

National Public Health Week

NPHWPublic health is the backbone of our society.  Without the contributions of public health initiatives, what new disease epidemic might we face and how many lives would be lost?  Successful public health programs depend on research, an often underappreciated facet of the system. By taking a critical look at the data and bringing the right programs to the right communities at the right time, research can target and increase the effectiveness of public health interventions.

This year, celebrate National Public Health Week by talking to your candidates for Congress.  Start a dialogue – tell them why research for medical progress and public health is important to you, and ask them where they stand.  You can send an email message to your candidate, send them a tweet (include the #AYCresearch hashtag) or attend a town hall near you and ask in person.  On Election Day, feel empowered to vote for the candidate who best reflects your priorities. If we don’t know where medical progress fits among the priorities of the people we elect, we will all pay the price.  Visit the Ask Your Candidates! website to learn more.

Statement by Research!America president and CEO Mary Woolley on Omnibus Bill

We applaud portions of the omnibus bill that support the nation’s research, innovation and public health ecosystem, which works to assure our future health and economic well-being. The growth in funding for the Food and Drug Administration, fueled in part by the common-sense return of the 2013 user fees, as well as the increases for the Centers for Disease Control and Prevention, the Agency for Healthcare Research and Quality and the National Science Foundation are welcome news.

But funding for the National Institutes of Health has been kept well below the level of scientific opportunity. We must eliminate sequestration once and for all, and grow our investment in NIH in order to slow and halt the progression of diseases and disabilities ranging from Alzheimer’s to diabetes to traumatic brain injury. The appropriators have worked in good faith to move the nation forward.  But as long as Congress avoids the primary issues fueling our national debt – tax and entitlement reform – it will be difficult to invest robustly in solutions to our problems.

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A Weekly Advocacy Message from Mary Woolley: Back to regular order, sort of?

Dear Research Advocate:

Following the lead of Budget Chairs Murray (D-WA) and Ryan (R-WI-01), Appropriations Chairs Mikulski (D-MD) and Rogers (R-KY-05) are trying to end the recent string of continuing resolutions and craft a funding compromise that advances the nation’s best interests. Congress may miss its January 15 deadline for appropriations, but it won’t likely shut down the government. We anticipate a short-term extension of the deadline while appropriators in both chambers work to craft an omnibus bill that reflects today’s priorities instead of blind, across-the-board cuts. It’s about time, you’re thinking (and I agree!) that Congress gets back to “regular order.” Regular order includes listening to constituents, content experts and advocates. That’s where you come in. Here is a link to the appropriators and the contact information for their legislative directors (LDs). Emailing their LDs may be the fastest route to reaching the members themselves. Tell them that you endorse their determination to appropriate in keeping with national priorities — and tell them what your priorities are. Continue reading →

Medical Research is Far-Reaching. It Saves Lives, Provides Hope, Fuels our Economy and More.

Recently, progress has been made in Congress that must not be confused for victory but is momentum to be capitalized on. For instance, the bipartisanship and compromise that we’ve seen in Congress is the first step in a long journey that is necessary for medical and health research to flourish and which provides temporary relief from sequestration. Now is the time to carry forward.

Advocates cannot tiptoe around other far-reaching truths: Our global competitiveness is at risk, young scientists are leaving the profession as fewer grants are awarded, Americans are dying, health care costs are exploding, and the facts prove it. Investing in innovation, at levels set to match and exceed scientific opportunity, is the best way to improve the well-being (both health and economic) of future generations. Send a message to Congress now to maximize funding for agencies that sponsor medical and health research!

Take action now.