Tag Archives: polls

A do-nothing Congress isn’t healthy

Op-ed by The Honorable John Edward Porter, Research!America Chair and former U.S. Representative (1980 – 2001) published in CNN.

John Edward PorterAt every congressional recess, the question remains: What has Congress accomplished to advance medical innovation, or for that matter any of our national priorities?

A ritual of leaving town with no meaningful action on pressing issues seems to have taken hold as lawmakers once again meet with voters in their districts. Indeed, much will happen during this break, but as elected officials hold yet another town hall meeting, Facebook or Twitter chat or public event, thousands will be diagnosed with cancer or get the dreaded confirmation from a physician that they or a loved one has Alzheimer’s disease. Thousands will suffer a heart attack or stroke, and thousands of parents will learn that their child has a rare disease.

Researchers are racing against the clock to identify a new gene or molecule that could lead to the next medical breakthrough and bring us closer to cures and new therapies to halt disease.

Time is of the essence in the scientific community, but unfortunately, our elected leaders continue to squander precious time in political, ideological battles that yield little or no results. Is this the Congress you elected? This is not the first elected body to tackle formidable challenges, but it may be the first that has failed miserably in addressing critical issues that will have short- and long-term implications for the health and well-being of Americans.

Spending bills to fund the National Institutes of Health, the Centers for Disease Control and other agencies in the next fiscal year remain in limbo as sequestration, across-the-board spending cuts enacted in March, tightens its grip on medical innovation. As a result of these mindless budget cuts, researchers are delaying or scrubbing promising studies. Institutions across the country have closed labs, reduced their work forces and implemented hiring freezes. Young scientists are rethinking their career paths or moving abroad to countries that have accelerated investments in research. Continue reading →

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New Poll Shows Minority Populations Support Clinical Trials to Improve Health of Others but Participation Remains Low Among African-Americans, Hispanics and Asians

Low Percentage Hear About Clinical Trials from Health Care Providers

 ALEXANDRIA, Va.—July  31, 2013—Altruism is a strong motivating factor for clinical trial participation in the general population and even more so among several minority groups. A significant percentage of African-Americans (61%), Hispanics (57%) and Asians (50%) say it’s very important to participate as a volunteer in a clinical trial to improve the health of others, compared to 47% of non-Hispanic whites, according to a new national public opinion poll commissioned by Research!America.

These findings are tempered by the reality that participation remains disturbingly low among all groups. When asked if they or someone in their family has ever participated in a clinical trial, only 17% of Hispanics, 15% of African-Americans, 15% of non-Hispanic whites and 11% of Asians said yes.

Only about a quarter of African-Americans, Hispanics and Asians say they have heard about clinical trials from their doctor or other health care provider. The percentage is even lower among non-Hispanic whites (19%). On the positive side, a strong majority — 75% of Hispanics, 72% of African-Americans, 71% of non-Hispanic whites and 65% of Asians — say they would likely participate in a clinical trial if recommended by a doctor.

“The poll reveals a willingness among minorities to participate in clinical trials to improve quality of health care, but enrollment remains stubbornly low,” said Mary Woolley, president and CEO of Research!America. “We must continue to strive toward reaching all segments of the population to boost the level of participation in order to further medical progress.”

Lack of trust is a major reason that individuals don’t participate in clinical trials, according to more than half of African-Americans (61%), Hispanics (52%), Asians (51%) and non-Hispanic whites (54%). In fact, 40% of African-Americans believe people are enrolled in clinical trials without being told, compared to 36% of Hispanics, 35% of Asians and 27% of non-Hispanic whites who are of this opinion. When asked how important the competence and reputation of people of the institution conducting the research would be in the decision to participate as a volunteer in a clinical trial, 73% of African-Americans, 66% of Hispanics and 66% of Asians said very important, compared to 72% of non-Hispanic whites, reinforcing the importance of trust among all groups.  Continue reading →

Cuts in research funding undermine medical innovation

Op-ed by The Honorable John Edward Porter, Research!America Chair and former U.S. Representative (1980 – 2001) published in McClatchy-Tribune newspapers, including the Great Falls Tribune, News & Observer, Times Herald Record and Billings Gazette.

John Edward PorterThe health of Americans and future generations is at risk. This seems incredulous given our track record in medical discoveries that improved health care and saved lives over the years. But our nation’s research ecosystem is now in a precarious state as a result of federal policies and proposals that continue to undermine medical innovation.

Sequestration, the across-the-board spending cuts for federal agencies, is a self-inflicted wound on our country and the pain is acutely felt by patients who cannot afford unnecessary delays in the development of new therapies and cures for their illnesses.

In short, the entire country is hurting and as much as we would like to believe medical progress will continue unabated, we must accept the inevitable consequence of sequestration and other federal actions that muzzle research and innovation – needless deaths, economic decline and challenges to our global competitiveness.

The current political environment lends itself to ideological battles that ignore national priorities. Those battles are draining the budgets of federal agencies that are critical to the sustainment of basic research and private sector innovation. Medical research, which has received overwhelming bipartisan support on Capitol Hill, is now caught in the crossfire of extreme partisanship and illogical decision-making. Continue reading →

Deaths in Women from Prescription Painkiller Overdoses Skyrockets Between 1999 and 2010

VitalSigns_logo-300pxA Vital Signs report from the Centers for Disease Control and Prevention earlier this month shows a staggering 400% increase in the number of women who died from a prescription painkiller overdose from 1999 to 2010. The rate of men’s deaths in that same category, meanwhile, rose 265% — a depressing number in its own right.

But the 400% increase in women means that in 2010, according to the CDC’s calculations, 6,600 women lost their lives because of a prescription painkiller overdose; that’s 18 women every day. That’s four times the number of deaths attributed to cocaine and heroin combined.

And once every 3 minutes, an ER somewhere in America sees a woman for problems resulting from opioid misuse or abuse.

“Stopping this epidemic in women – and men – is everyone’s business,” Tom Frieden, MD, MPH, director of the CDC, said in a press release. “Doctors need to be cautious about prescribing and patients about using these drugs.”

Polling commissioned by Research!America in March helps contextualize the issue. In the poll, 85% of respondents expressed their concern about the potential for misuse of prescription painkillers; of those, half said they were very concerned. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Time for a New Tax Code

Dear Research Advocate:

Our elected representatives know they must make hard tax and entitlement reform decisions, and, for the sake of the nation, ensure those decisions foster economic growth and societal progress. Part of that equation is federal funding for medical research sufficient to capitalize on unprecedented scientific opportunity and tackle urgent threats like Alzheimer’s Disease. As I’ve highlighted before, a majority of Americans say they are willing to pay additional taxes — $1 more per week (which amounts to approximately $4.4 billion annually) — if they knew those dollars were funding medical research. The public is on our side with their wallets as well as their hearts and minds!

Speaking of taxes, the Senate Finance Committee is working on a tax reform package, and Chairman Max Baucus (D-MT) and Ranking Member Orrin Hatch (R-UT) are soliciting comments from their Senate colleagues to rebuild the tax code starting from a blank state. One component that definitely should be included is the R&D tax credit. This credit is a proven engine of economic development that spurs innovation. It creates jobs and supports critical medical research that otherwise would not be conducted. However, as it stands, the credit must be reauthorized each year. This is not only absurdly inefficient, it is counterproductive since the uncertainty it creates reduces the credit’s stimulative effect on R&D. First and foremost, of course, it is critical that the R&D tax credit be included in the tax package, but it is also extremely important to make the credit permanent to amplify it as a catalyst to economic and medical progress. Click here to view the letter Research!America sent in support of the tax credit, and click here to urge your senators to work with the committee to include the R&D tax credit in the tax package and finally make it permanent. Continue reading →

Does Spanish Austerity Provide a Glimpse into the Future of American Research?

Spain’s economy was harshly affected by the 2008 financial crisis and, later, the eurozone crisis. (Just this week, the country’s budget minister said Spain has reached a turning point and may at last be emerging from its financial troubles.) Its efforts to slash government spending left few unaffected, and a recent article by Agence France-Presse detailed the effects on Spanish researchers.

The Prince Felipe Research Center, in the coastal city of Valencia, lost around half of its funding from the Spanish government; as a result, it closed half of its 28 labs and let go 114 workers. María Jesus Vicent told the wire service that her lab had made great strides in prostate cancer research, but there’s no money to move forward into animal testing.

The fallout is obvious: fewer people employed (in a country that already has a staggering unemployment rate) and medical breakthroughs left on the shelf. Less obvious is this anecdote from the story, which demonstrates a near elimination of return on investment: “Now the center’s hi-tech installations are falling into disuse, with its two mechanized operating theaters for animal research now being used for training courses instead.” 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: A thorn-laden rose

Dear Research Advocate,

The President’s budget is out and it’s a mixed bag. First, the good news. NSF was given a significant funding boost, $593M over 2012 levels, NIH funding was increased by $470M, and AHRQ, via budget trade-offs, looks to have been boosted by $64M. The increases are from FY12 to FY14, since the President’s budget replaces sequestration in a different way than either Congressional body (see more below). The not so good news in the President’s budget is that other health research agencies did not fare well. The CDC budget was cut deeply, especially prevention programs. FDA was essentially flat -funded. And entitlement-reform may pose a challenge to innovation.

The different ways the three budgets, President, Senate and House, deal with sequestration is symptomatic of the continuing failure to reach agreement on anything resembling comprehensive legislation, including so-called “grand bargains.” The fact that there is so much attention to medical research in the President’s budget, as well as on the floor of the Senate recently, and from a number of Members of Congress, speaks to the progress the research advocacy community is making in bringing medical research to the forefront. But success to date has not diminished the need for heightened advocacy for public health and social sciences research, nor the imperative of carefully evaluating the full consequences of changes to entitlements. The three budgets deal with entitlements in different ways, but with similar ill-effect when it comes to innovation. There is no question that we need tax and entitlement reform, and no question that sequestration must be eliminated; however, we cannot thrive as a nation or succeed at deficit reduction if entitlement reforms come at the expense of private sector innovation.  See our statement on the President’s budget here.

Speaking of social science research — so clearly under fire —  it is not too late to RSVP to a Capitol Hill briefing we are co-hosting tomorrow on economic research. There is a terrific lineup of speakers.

I know many of you attended the Rally for Medical Research on Monday here in Washington,  a coalition effort led by the AACR. Thousands of like-minded research advocates and a wonderful array of speakers, including our board chair, The Honorable John Porter, gathered to crank up the volume for research. In his remarks, Mr. Porter urged advocates to get fighting mad or we risk continued cuts from Congress. Review his remarks here; then, take a moment to participate in the Rally’s on-going text messaging campaign to urge Congress to assign a high priority to medical research. You can view press coverage of the event and the full list of speakers. During the event, social media attention was strong — messaging trended #2 globally on Twitter.  That’s the level of volume and attention we must continue to maintain if we want to see a happy ending to budget negotiations.  Please do your part!

More than 50 Nobel laureates are doing their part; they have joined forces to send a letter to Congress urging them to fund, rather than freeze or cut, research and development. In the letter, the Laureates cite their deep concern over reduced funding levels and the negative impact this will have on the next generation of scientists and ultimately, upon our nation’s economic vitality. It’s a good reminder that the full science community is in this battle together.  Take a moment now to echo their message by urging your representative to sign on the Markey-McKinley letter calling for a $1.5B boost to NIH funding. Click here to see the list of current signers. If your representative is on the list, be sure to thank them for standing up for research. If they haven’t signed-on yet, click here to send them a message.

On Monday, we released our latest national poll, focused on chronic pain and drug addiction. Surprisingly, only 18% of the poll respondents believe chronic pain is a major health problem, yet two-thirds know someone who has sought relief from chronic pain. Huge majorities are concerned about  abuse or misuse of prescription medications; the need for better understanding of how to address chronic pain literally cries out for research. You can view our media release here.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: After sequestration, will research be protected in the budget battles?

Dear Research Advocate,

To say that the attention paid to sequestration is extraordinary is to understate the case, but there has not been enough public outcry to force meaningful congressional action. It is highly unlikely that a rabbit will be pulled out of a hat between now and 11:59 p.m. tomorrow night. Damage will be done, and meanwhile the political playing field switches to a new month and new, related and ever-deepening crises. Possibly the only good news is that the media has ratcheted up coverage of the impact of sequestration on medical research, with stories about “cuts on top of cuts on top of cuts,” in the words of Eric Hoffman of Children’s National Medical Center, one of many who have spoken out. Former NIH Director and Research!America Board member Dr. Elias Zerhouni of Sanofi described sequestration as “impact[ing] science for generations to come.” FASEB, among many groups working to keep the story alive, has released state data, detailing NIH grant funding cuts that amount to more than $1.2 billion in lost research dollars. The Baltimore Sun recently ran a story highlighting how cuts may drive researchers overseas, with quotes from Research!America Board member and Nobel laureate Dr. Carol Grieder. Concern about global competitiveness is confirmed by a new Research!America poll of small business leaders, with other findings of note including two-thirds saying that federally funded basic research is important to private sector innovation. We have seen unprecedented attention to this data on Facebook, generating nearly 4,000 views in just one day. Write your representatives and use the poll data to convey the strong base of support for research — and the importance of making it a priority.

All advocates must be on alert for the budget battles of March, including funding for the remainder of the current fiscal year, which ends September 30, as well as the first salvos of the next fiscal year budget (2014). Three budgets will be presented – president, House and Senate. The questions are: Will the impact of sequestration be blunted during budget negotiations, and will research for health be a priority? We must all continue to work for that outcome, as individuals and as a community.

A Financial Times op-ed by Research!America member and MIT President Dr. Rafael Reif and Craig Barrett, former chairman of Intel, provides a concise and articulate summary of the consequences of cutting science — or, said another way, failing to prioritize it. They point out that the U.S. has an economic growth problem. They underscore the importance of investing in research and innovation as the way to reverse the downward trajectory of U.S. ranking in terms of R&D as a percentage of GDP among OECD countries and to return us to the level of national prosperity that thrives on the transformational ideas of young scientists. Other countries are using our playbook for economic growth; why aren’t we?

The NIH has released an operating plan should sequestration take effect. For the remainder of the current fiscal year, the NIH will likely reduce funding levels for continuing grants and will make fewer competing awards. All Institutes and Centers will be subject to a budget reduction, with each institute or center director having discretion over which programs to prioritize. The NSF has also released a statement; the agency will reduce the number of new grants in FY13 by 1,000 due to sequestration. All continuing FY13 grants will be awarded and existing grants will not be reduced.

Lastly, we mourn the loss of Research!America’s Honorary Director Dr. C. Everett Koop, a charismatic Surgeon General who forcefully called attention to our nation’s major health threats. He was a magnificent champion of research. His legacy is second to none. Read our statement here.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Merry Cliftmas?

Dear Research Advocate,

Are we heading over the fiscal cliff? You have probably seen the several public opinion polls saying most Americans now think it’s inevitable. (“Merry Cliftmas,” says Jon Stewart.) Our latest polling tracks with that of others — and adds a timely insight. Just when one might least expect Americans to voluntarily increase what they owe to Uncle Sam, more than 50% say they would be willing to pay $1 more per week if they were sure the dollars would go to medical research. See this finding and more in a new poll we commissioned to take the pulse of Americans at this high-stakes time in our history.

We have been asking about willingness to pay more in taxes for years now, but it is particularly relevant now while elected officials are talking about tax reform and so many people are rethinking the role of government. We hope that advocates will use our poll data, emphasizing that Americans believe research is a part of the solution to containing health care costs and a significant driver to our economy.

You’ve heard about the impact of the fiscal cliff (and possible solutions to it) on NIH and other agencies that support research, but what about the impact on private sector innovation? Our VP for policy and programs, Ellie Dehoney, points out that cuts to Medicare and Medicaid reimbursement rates could create a disincentive for venture capitalists to invest in new medicines. Read the full article in Genetic Engineering & Biotechnology News. New investment in biotech is already down significantly from last year, a trend that does not bode well for patients waiting for innovative treatments.

According to a new brief from the Center for American Progress: “Our national investments in research and development as a percentage of discretionary public spending have fallen from a 17% high at the height of the space race in 1962 to about 9% today, reflecting a shift in priorities of our government.” That’s disturbing, the authors assert, since research and innovation are powerful economic drivers. Public sector funding is slipping in a key area just when we need it most. For more on how innovation powers the economy, see a new report from the Information Technology and Innovation Foundation: The 2012 State New Economy Index. Wherever your state ranks, its future economic success depends on robust investment now in the knowledge economy.

United Health Foundation and its partners have released the 23rd annual America’s Health Rankings — a wonderful resource that tracks key state health indicators across the nation, providing fuel for targeted public health strategies. Investing in research that will open more doors to prevention of obesity is just one of the answers to the call to action issued by the report and its accompanying release.

To help our federal leaders understand how very much is at stake right now, we must all get involved in illustrating the impact slashing research funding will have on individuals, families, careers and business. The AAAS has launched an initiative enabling you to submit a comment and/or a video about current threats to R&D funding, information that will then be used for advocacy. Please take a moment to add your voice!

Sincerely,

Mary Woolley