Tag Archives: health care

A Weekly Advocacy Message from Mary Woolley: Let me tell you a story…

Dear Research Advocate:

Appropriately, it was Jack Valenti, prominent former president of the Motion Pictures Association of America, who recommended to politicians that every speech should include the six words: “let me tell you a story.” Stories have impact in ways reports do not. Eddie Redmayne as Stephen Hawking, a theoretical physicist diagnosed with a form of the motor-neuron disease amyotrophic lateral sclerosis (ALS), in The Theory of Everything, and Julianne Moore as Dr. Alice Howland, a fictional linguistics professor diagnosed with early onset Alzheimer’s, in Still Alice, were Academy Award winners last Sunday evening. These films grappled with devastating diagnoses for the patient and their loved ones, putting a face to the 30,000 Americans living with ALS and the more than 5 million Americans living with Alzheimer’s.

A less high profile but impressively high impact group of advocates for rare disease research traveled to D.C. from around the nation to tell their own – personal and nonfictional – stories about the toll visited on patients and families by a wide range of diseases that also call out for more research. Having spoken with the group early yesterday morning before they fanned out on Capitol Hill, I can attest to how well-rehearsed and determined they were to make their case. I recalled that it is patients and their families who have, historically, so often made the breakthrough difference in advocacy for research, going back to the key role of the March of Dimes in focusing the nation on the imperative of putting research to work to defeat polio, through the paradigm shifters called AIDS activists and women’s health research advocates, and many more. Now is the time for more stories to be told on Capitol Hill, at this moment of opportunity for galvanizing Congress’ increasing interest into action. Continue reading →

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Majority of Americans Believe Another Government Shutdown Likely in Coming Months; Last One Harmful to Medical Research

New National Poll Reveals Many Respondents Predict China will Surpass U.S.
in Science and Innovation by 2020

ALEXANDRIA, Va.—December 3, 2013—Nearly two-thirds (65%) of Americans say it’s likely there will be another government shutdown in the months ahead as Congress continues to debate deficit and budget issues, according to a new national public opinion poll commissioned by Research!America and the American Society of Hematology. This sentiment is shared across party affiliations: Democrats (66%), Republicans (65%) and Independents (65%). There is also consensus across party lines that government dysfunction has consequences. A majority of Americans (57%) say the shutdown in October caused significant harm to many government-funded programs including medical research, defense and education. Democrats (68%) and about half of Republicans (49%) and Independents (51%) agree.

On the topic of sequestration, a plurality (44%) says Congress must tackle tax and entitlement reform to reduce the deficit instead of continuing the 10 years of across-the-board cuts; another 16% say sequestration is not the right way to reduce the deficit. Less than a quarter (23%) believe the across-the-board cuts are a way of ensuring that many government programs share the pain, and 17% say they’re not sure. In general, 62% of Americans say they’re concerned about the long-term effects of sequestration on advances in health care such as the development of new drugs and other treatments.

“Our poll demonstrates uneasiness among many Americans about the ramifications of deep spending cuts to programs that are critical to our health and well-being,” said Mary Woolley, president and CEO of Research!America. “Americans want Congress to reach a budget deal that protects medical and health research, at least in part because of concern that our nation is at risk of losing our global leadership position in science and innovation.” Continue reading →

A Weekly Advocacy Message from Mary Woolley: America can do better

Dear Research Advocate:

The 50th anniversary of the March on Washington and the clarion call for equality for all Americans brings to mind the work still to be done to address health disparities. For example, cancer incidence and death rates are significantly higher for African-Americans than for all other ethnic groups, and Hispanic and African-American adults are 1.5 to 2 times more likely to have diabetes than white adults. Our polling shows that nearly 75% of Americans believe it is imperative to conduct research to understand and combat health disparities. As a community of advocates, we need to press policy makers to keep this unacceptable gap in health care and health outcomes in their sights. America can do better.

As September nears, Congress returns to Washington with a looming fiscal debate. Treasury Secretary Jack Lew reports that the debt ceiling will need to be raised earlier than anticipated, possibly as soon as mid-October. The urgency of this deadline takes away any buffer time on which congressional leadership may have hoped to rely. A funding measure for FY14, sequestration, the debt limit, reforms and a government shutdown may well be contenders in the upcoming debate. It will certainly keep advocates for medical and health research busy — fighting sequestration, pushing for greater research funding, pressing for the exemption of user fees from sequestration (should the across-the-board spending cuts remain in place), and even weighing in on the impact of tax and entitlement reform on medical innovation, although it is unlikely that such a reform effort would happen now. Continue reading →

Member Spotlight: The TMJ Association

TMJ AssociationThe TMJ Association, Ltd. (TMJA), a Research!America member, was founded in 1989 in Milwaukee, WI by two TMJ patients. The organization’s mission is to improve the quality of health care and lives of everyone affected by Temporomandibular Disorders (TMD), commonly called TMJ. TMD are a complex and poorly understood set of conditions characterized by pain in the jaw joint and surrounding tissues with limitation in jaw movements. TMD pain may range from mild discomfort to severe and intractable accompanied by jaw dysfunction necessitating a feeding tube for sustenance. For many sufferers, their ability to chew, swallow, make facial expressions, and even breathe is limited. It is estimated that over 35 million Americans suffer from TMD; the majority are women in their childbearing years.

With no scientific guidance and no research into treatment strategies, health care providers are incapable of making evidence-based treatment decisions for TMD patients. The result has been more than 50 unproven treatments — including drugs and surgery — recommended to TMD patients. When treatment goes awry, pain and dysfunction worsen. So the need for research remains paramount. The only entity currently funding TMD research in America is the National Institutes of Health (NIH). Continue reading →

New National Public Opinion Poll Shows Majority of Americans Would Participate in Clinical Trials if Recommended by Their Doctor

Only Small Percentage say Health Care Professionals Have Ever Talked to Them about Medical Research

ALEXANDRIA, Va.-June 12, 2013 – More than two-thirds (72%) of Americans say it’s likely they would participate in a clinical trial if recommended by their doctor, but only 22% say a doctor or other health care professional has ever talked to them about medical research, according to a new national public opinion poll commissioned by Research!America. A wide majority (80%) say they have heard of a clinical trial – more than half (53%) through the Internet and only 24% from a doctor or other health care provider.

Only 16% of those polled say they or someone in their family have ever participated in clinical trials. Respondents believe individuals don’t participate because of a lack of awareness (53%), a lack of trust (53%), concerns that it’s too risky (51%), adverse health outcomes (44%), little or no monetary compensation (35%), privacy concerns (27%), and worries that it takes too much time (27%).

The findings point to the important role of health care providers in talking to their patients about clinical trials. “It is critical for providers and health systems in the U.S. to recognize the importance of generating knowledge about which treatments are best through participation in clinical trials,” said Robert Califf, MD, vice chancellor of clinical and translational research at Duke University Medical Center and board chair of the Clinical Research Forum, a co-sponsor of the poll. “Advances in common diseases like Alzheimer’s and diabetes, as well as rare diseases, depend on physicians and other members of the health care team offering their patients a chance to participate in clinical trials.” Continue reading →

A Weekly Advocacy Message from Mary Woolley: Stop Sequestration, Take Action TODAY

Dear Research Advocate,

The debate over how to stop sequestration rages on, with the president weighing in this week even as some influential Members of Congress hold fast to a do-nothing strategy. Now it’s time for us all to speak out! Along with our partners, we are pulling out the stops TODAY with a coordinated Day of Action. In just 10 minutes you can call and email your representatives, as well as congressional leadership. Then ask everyone in your networks — professional and personal — to do the same. Use this link to find our e-action alert and click here for access to congressional emails and phone numbers. Congress pays attention to volumes of communication; act now to assure that they know that sequestration is no way to drive the economy or improve health.

Research!America Board members and former Congressmen John Porter and Kweisi Mfume are speaking out with a timely op-ed in The HillThe bottom line? Our nation must find its way to a fiscally sustainable path without sacrificing programs that improve our health and our economic prosperity. Former Governor John Engler, CEO of Business Roundtable (BRT), is calling for a pro-growth solution to the nation’s deficit; he points out that failure to act, and moving from one fiscal crisis to another, is counterproductive to sustained growth. A new report from BRT also speaks to the importance of our nation continuing to invest in STEM education and federal R&D.

Until the sequestration battle is resolved, likely at the 11th hour as usual, the media will be hungry for stories and examples of how sequestration could affect your community or your institutions. The Boston Globe has been providing ongoing coverage of impact in the greater Boston area, but media outlets in other parts of the country have yet to follow suit. It’s time to pitch your story to the media! Fortunately, compelling data and persuasive arguments for your op-ed, article or letter to the editor are easy to come by. United for Medical Research has just released a new report detailing what’s at stake: more than 20,000 jobs and $3 billion in economic output. Science Works for U.S. has put together an excellent video resource featuring research leaders from across the country speaking out about sequestration. See also this new report from the American Cancer Society Cancer Action Network, providing chapter and verse on how federal funding pays off.

Media attention to State of the Union address on February 12 provides another opportunity to emphasize sequestration’s potentially devastating impact on research. Join Research!America and the American Cancer Society Cancer Action Network for a pre-SOTU Twitter chat on Monday, February 11, 1 to 2 p.m. ET. Visit @ResearchAmerica and @ACSCAN on Twitter to follow me and ACSCAN President Chris Hansen as we discuss important facts about sequestration and answer questions from participants. Use the hashtag #curesnotcuts in your tweets to join the conversation.

In case you missed it, Rep. Eric Cantor (R-VA) delivered a speech extolling the cost-controlling, as well as healing power, of research and called for cutting unnecessary red tape and for the repeal of the medical device tax. He described the federal government’s vital role in supporting basic medical research “appropriate.” But his remarks also called for “re-prioritizing” existing research spending, away from the social sciences. His remarks make it clear that advocates have our work cut out to connect the dots between social science research and controlling health care costs and saving lives.

Dr. Carolyn Clancy is stepping down from AHRQ after a distinguished 10-year record of improving health care delivery and ensuring that medical providers use up to date evidence-based practices. Read our press statement here. NSF Director Dr. Subra Suresh is also leaving his position. Dr. Suresh has been instrumental in fostering interdisciplinary collaborations throughout NSF and has worked to broaden participation in NSF-supported activities. You can read our press statement here. The Board of Research!America and I salute them for their outstanding public service, dedication to research and regular participation in our forums and other programs.

Sincerely,

Mary Woolley

Majority of Americans Say the New Congress Should Take Immediate Action to Expand Medical Research

New Poll Data Summary reveals concerns among Americans about medical progress even in tight fiscal environment

Alexandria, Va.January 9, 2013America Speaks, Volume 13, a compilation of public opinion polls commissioned by Research!America, features timely data about Americans’ views on issues related to biomedical and health research. A majority of Americans (72%) say the new Congress and the President should take action to expand medical research within the first 100 days of the 113th Congress.  Public support for increased government spending on medical research holds particular relevance as Congress considers whether to further delay, eliminate or permit “sequestration,” a budget cutting process that – if it moves forward – would mean drastic cuts in funding for medical research.

“Americans will be looking closely at the actions of the new Congress to see whether lawmakers support policies that will accelerate research and scientific discovery,” said Research!America Chair John Edward Porter. “We’re on the brink of finding new treatments and cures for many deadly and debilitating illnesses. Congress must act to ensure that funding for research is sufficient to address current and emerging health threats.”

Most Americans believe accelerated investments in medical research should be a priority, yet nearly 60% say elected officials in Washington are not paying close attention to combating the many deadly diseases that afflict Americans. An overwhelming majority of Americans (83%) also believe that investing in medical innovation has a role in creating jobs and fueling the economy.

When asked about stagnant federal funding levels for research and the impact to science and technology, a wide majority (85%) said they were concerned.

Americans also expressed concerns about U.S. global competitiveness in the near future. Less than half (41%) believe the U.S. will be the world leader in science and technology in the year 2020. In addition, almost half (48%) do not believe the U.S. has the best health care system in the world.

“Consistently, our polls have shown that Americans value research and believe it’s part of the solution to what ails us,” said Research!America President and CEO Mary Woolley. “The return on investment is demonstrated in medical breakthroughs that have made diseases that were considered a death sentence into treatable conditions.”

Twenty years ago, AIDS ranked as the number-one health concern among Americans. Since then, research has saved countless lives and continues to drive progress. The number one health concern in 2012 was the cost of health care.

Among notable highlights in the booklet:

  • 78% of Americans believe that it is important that the U.S. work to improve health globally through research and innovation.
  • 70% of Americans believe that the government should encourage science, technology, mathematics and engineering (STEM) careers.
  • Nearly half (48%) believe government investment in health research for military veterans and service members is not enough.
  • 66% of Americans are willing to share personal health information to advance medical research if appropriate privacy protections were used.
  • 75% say it’s important to conduct research to eliminate health disparities.
  • Only 1 in 5 (19%) know research is conducted in every state.

To view America Speaks, Volume 13, visit: http://www.researchamerica.org/uploads/AmericaSpeaksV13.pdf

Research!America began commissioning polls in 1992 in an effort to understand public support for medical, health and scientific research. The results of Research!America’s polls have proven invaluable to our alliance of member organizations and, in turn, to the fulfillment of our mission to make research to improve health a higher national priority. In response to growing usage and demand, Research!America has expanded its portfolio, which includes state, national and issue-specific polling. Poll data is available by request or at www.researchamerica.org.

Online polls are conducted with a sample size of 800-1,052 adults (age 18+) and a maximum theoretical sampling error of +/- 3.2%. Data are demographically representative of adult U.S. residents. Polling in this publication was conducted by Zogby Analytics and Charlton Research Company.

About Research America

Research!America is the nation’s largest nonprofit public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, Research!America is supported by member organizations representing 125 million Americans. Visit www.researchamerica.org.

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