Tag Archives: research advocacy

A Weekly Advocacy Message from Mary Woolley: Are we entering “A Dark Age for Science in America”?

Dear Research Advocate:

The Commerce Department’s report of the U.S. trade deficit narrowing to its lowest level since October 2009 is welcome news, but the devil is in the details. Despite the economic progress, our trade deficit with China is nearly as large as our overall trade deficit. Put that together with the fact that China is rigorously investing in R&D while our nation stifles it, and you can see the handwriting on the wall. U.S. export capabilities will be stymied while China’s are bolstered. It’s not a recipe for a strong and stable economy going forward.

China is not the only nation steadily increasing investment in R&D, taking a page from what used to be the U.S. playbook. As I shared with Jonathan Cohn of The New Republic for his article today, “If federal funding continues to decline, our leadership status in the short-term will be tenuous at best.” Research!America’s polling on international competitiveness shows that Americans are acutely aware of our declining leadership status: More than half believe that a country other than the U.S. will be the global leader in science and technology by 2020. A quarter of respondents say that China will be the next world leader.

Sam Stein of The Huffington Post portrays the consequences of short-sighted budgets for science. His story’s dramatic headline — “Sequestration Ushers In A Dark Age For Science In America” — is illustrated with economic points and also stresses what may be lost in terms of scientific discovery. Claire Pomeroy, MD, president of the Albert and Mary Lasker Foundation, reinforces the sentiment in her piece on the importance of research advocacy, also in The Huffington Post yesterday. Please join us in being sure your elected representatives receive the message carried in these articles, and then urge everyone in your networks to do the same! 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

April is Parkinson’s Awareness month

PDF AprilParkinson’s disease affects millions of people worldwide. Patient advocacy groups like the Parkinson’s Disease Foundation and the Parkinson’s Action Network provide resources to patients and advocacy tools to promote more research on this devastating disease. PDF has a toolkit to empower advocates and patients to spread the word, educate themselves and others and learn more about Parkinson’s research funded by PDF.

PAN Tulip

Meanwhile, PAN is urging advocates to contact their representatives in Congress to support a bipartisan effort to increase funding for the National Institutes of Health; you can also plant a virtual tulip in honor of a loved one and make a contribution to PAN in their honor.

Survivor Margaret Tennent writes on PDF’s patient stories what it is like to live with Parkinson’s:

Continue reading →

One week away: the Rally for Medical Research

Rally For Medical ResearchNext Monday, April 8, is the Rally for Medical Research! Speakers at the rally will include Research!America Chair the Honorable John Edward Porter, Rep. Rosa DeLauro (D-CT), Ranking Member on the Labor-HHS-Education Appropriations Subcommittee and Rep. Chris Van Hollen (D-MD), Ranking Member on the House Budget Committee as well as actress and breast cancer survivor Maura Tierney (best known for her roles on NewsRadio & ER) and many others!

If the medical research community advocates hard enough and loud enough, we may be able to turn the tide on cuts to research funding. As recently reported in the Washington Post, sequestration cuts can be countered if we urge policy makers to make research a higher national priority. Now, more than ever, we must make it clear to our legislators that federal research funding is critical to the health and well-being of Americans.

If you can’t make it to the rally, you can watch the event live on the web, contact your representatives in Congress and write a letter to the editor for your local paper to support medical research. Resources to help you write and call your Senators and Congressmen or to write a letter to the editor are available in the Rally’s toolkit.

A special thanks to Maura Tierney, Rep. Chris Van Hollen and Rep. Rosa DeLauro for their support of the Rally and medical research!

The Impact of Sequestration on Medical Research

Sequestration will have a devastating impact on biomedical research and public health in the U.S. Learn more about the effects of sequestration — 10 years of across-the-board spending cuts for federal agencies including the National Institutes of Health, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the National Science Foundation — on our website. We encourage you to use this information as you continue to advocate for medical research and join us as we fight to reverse sequestration.

The Honorable John Edward Porter, chair of Research!America, sat down recently with Kellye Lynn of “Comcast Newsmakers” to discuss sequestration and why such cuts are detrimental to medical innovation. Click on the image below to watch the interview.

Porter_ComcastNewsmakers

Research!America’s President, Mary Woolley, participates in PAN Advocacy panel discussion

Research!America President and CEO Mary Woolley joins James “J.P.” Paluskiewicz, deputy chief of staff to Rep. Michael Burgess, MD (R-TX); Cynthia Rice, vice president for government relations, Juvenile Diabetes Research Foundation; Israel Robledo, Parkinson’s Action Network Texas state director; and Lisa Shulman, MD, professor of neurology, University of Maryland in a panel discussion about the power of research advocacy. The panel, hosted by Parkinson’s Action Network and moderated by PAN CEO and Research!America Board member Amy Comstock Rick, JD, discusses how to be an effective advocate and communicate effectively with congressional staff to achieve your advocacy goal.

When asked what makes a good advocate, Woolley advises that we must clearly articulate our case, listen to the decision makers’ questions and answer them as best we can. We should be authentic and personal in our communications. Woolley also notes in her comments that many people can be advocates; in fact, public opinion polls show that the public expects patients, researchers and clinicians to all participate alongside Congress in shaping policy.

For advocates who can’t make it to Washington, DC, Woolley has practical advice on ways to advocate from home. During the congressional recess, lawmakers and their staff typically schedule meetings in their district offices with constituents and hold town halls. Advocates should try to meet with their representatives when they’re home for the recess, tell their personal stories related to research to local media, and submit letters to the editor in hometown papers to spread the message. Support for medical research is one of many advocacy topics discussed on Capitol Hill; hearing the same message from a home district shows our representatives how important the issue is to their constituents. And don’t underestimate the impact of a single email or phone call; the volume and passion of the advocacy message for medical research matters.

Woolley also talks about the need to remember the long-term goal and that this is “an iterative process.” There will be steps forward as well as apparent failures, but we can learn from everything. And with reduced funding for research under sequestration, it is important that medical research advocates continue to work together to promote research advocacy as a whole — not promote one disease or area of research over another — for the benefit of the entire research community and health of Americans.

Advocates should be aware that there is a Congressional recess this week and next, making this an opportune time to speak with your representatives at home!

Watch the full panel discussion for insight and advice from other panel members.

Researchers achieve groundbreaking results with cell therapy to treat acute leukemia

Scientists at Memorial Sloan-Kettering Cancer Center, a Research!America member, have successfully treated a handful of leukemia patients with cutting-edge immune cell therapy. This therapy, similar to previous trials at the University of Pennsylvania and the National Cancer Institute, modifies the patient’s immune cells so that they recognize and kill the cancer cells. This experimental therapy provides a new avenue of treatment for patients who have undergone all of the traditional treatments like chemotherapy without achieving remission of the cancer. Read more about this exciting breakthrough in this New York Times article.

The study’s senior author, Michael Sadelain, MD, PhD, expressed his excitement over the results.

“We’re creating living drugs,” Sadelain said in the article. “It’s an exciting story that’s just beginning.”

This study, like so many other major breakthroughs in medicine, was made possible by funding from NCI. This particular immunotherapy has been in development and testing for more than a decade. Articles describing the foundational research for this month’s breakthrough cite financial support from the National Institutes of Health (Brentjens et al, Nature Medicine, March 2003) and the basic scientific principles used to safely modify human immune cells had to be well established before the 2003 experiments could begin. Investments in basic research are necessary to drive medical progress. It is hard to argue with the value of those investments when you read the stories of the patients whose lives were saved by this treatment.

Join the Rally for Medical Research on April 8, 2013

The Rally for Medical Research will be held on Monday, April 8 at 11:00 a.m. in Washington, DC, on the steps of the Carnegie Library. Join Research!America and more than 100 other organizations to call on our nation’s policymakers to make lifesaving medical research a higher national priority. With the support of researchers, patients and advocates, the Rally for Medical Research is a tremendous opportunity to send a powerful, coordinated message to Capitol Hill.

If you can’t make it to DC for the Rally, you can take specific actions on April 8 such as:

  • Send an email to or call congressional offices,
  • Tweet members of Congress with a message or post on the member’s Facebook page,
  • Write letters to the editor and place op-eds in newspapers across the country before and during the week of April 8, and
  • Gather a group of individuals to schedule a meeting with their members of Congress’ district office.

You can also contact your Congressional representatives and inquire about upcoming town hall events or meetings in your district during the upcoming recess. With passage of yet another continuing resolution, Congress has established funding for the remainder of FY13 without reversing the senseless across-the-board spending cuts known as sequestration. It is vital that we speak out now to advocate for FY14 funding levels that reflect the importance of research and a commitment to federal agencies like NIH, CDC, NSF, AHRQ and FDA.

Research!America, Research Australia, Research Canada and Research!Sweden sign letter of agreement

Research!America and its international partners, Research Australia, Research Canada and Research!Sweden, have signed a letter of agreement, capitalizing on a long-standing partnership among these research advocacy organizations. Over the past decade, Research!America, Research Australia and Research Canada have met informally on several occasions and presented and attended each organization’s annual meetings and conferences. Recently, Research!Sweden joined this alliance, bringing its unique programs, approaches and strategies to this international group.

The agreement is intended to foster greater collaboration among the four organizations in an effort to leverage expertise, advancements and approaches in health research advocacy, as well as facilitate the sharing of best practices in biomedical and health research advocacy, governance and operational policies and procedures. The agreement will promote enhanced communications among the four organizations and open the door to explore opportunities to collaborate internationally on health research advocacy ventures. The two-year agreement reflects the efforts of all four organizations to make biomedical and health research higher priorities in their respective countries. You can read the full letter of agreement here on Research!America’s website.

You can also visit the websites for these international research advocacy organizations: Research Canada, Research Australia and Research!Sweden.

Guest Post: Arthur S. Levine, MD of the University of Pittsburgh School of Medicine

Arthur S. Levine, MDEveryone understands that it’s necessary to take a hard look at the federal budget and cut costs. The problem with the sequestration is that it recklessly cuts every category of spending across the board at a time when we should maintain critical investments that will pay for themselves in the long run.

One of my roles at the University of Pittsburgh is to advocate for federal investment in biomedical research through the National Institutes of Health (NIH), which administers grants to scientists around the country. About 80 percent of all funding for medical research in American universities comes from the NIH.  One quarter of NIH funding is for research that leads directly and quickly to improved health care and is aimed at answering important questions like whether hormone replacement therapy is safe and effective for all post-menopausal women. Another 55-60 percent is for basic science research to understand biology at the cellular and molecular levels, research that, while often taking years to bear fruit, time and again yields unexpected discoveries—especially ones that lead to drugs and vaccines—with profound implications for human health.

To consider NIH-funded research only as an expense is to completely misunderstand its purpose. The federal government has long supported biomedical and behavioral research because it’s a wise investment that pays great dividends for all Americans.  In addition to improving health and the quality of life, scientific advances spur the economy as private enterprise takes on the commercialization and implementation of our discoveries. A report by the nonpartisan Information Technology and Innovation Foundation recently estimated that sequestration cuts to science would reduce the GDP by $200 billion over the next few years.

Sequestration was designed to be a nonsolution—a fate so objectionable and threatening to both political parties that it would force compromise.  Sadly, it will likely do what it was designed to do—have devastating and crippling effects on our nation for years to come.  Though compromise is still possible, time is short. Unless the president and Congress achieve a mutually agreeable solution that alleviates the worst of these effects in the coming days and weeks, Americans will be robbed of the very significant economic gains and the better and longer lives that result from the nation’s investment in biomedical research.

Arthur S. Levine, M.D.
Senior Vice Chancellor for the Health Sciences and Dean,  School of Medicine
University of Pittsburgh

Follow news and updates from the University of Pittsburgh Medical Center and Schools of Health Sciences on their blog. Research!America thanks the University of Pittsburgh School of Medicine and Arthur S. Levine, MD for their contributions to research and for their advocacy in this editorial published in the Pittsburgh Post-Gazette. Read the extended editorial here.

One in three seniors dies with Alzheimer’s or dementia

A new report from the Alzheimer’s Association reveals that one in three seniors suffer from some form of dementia or Alzheimer’s by their death. Deaths attributed to Alzheimer’s and dementia have increased 68% from 2000 to 2010.

Harry Johns, president and CEO of the Alzheimer’s Association and Research!America Board member, said in an Alzheimer’s Association release  that “urgent, meaningful action is necessary, particularly as more and more people age into greater risk for developing a disease that today has no cure and no way to slow or stop its progression.”

USA Today reports that the number of people with Alzheimer’s disease is expected to nearly triple by 2050, resulting in an increasing burden on medical costs and caregivers. Currently, there is no way to prevent or slow the progression of Alzheimer’s or other types of dementia.

With growing health care costs consuming the federal budget, policy makers are considering ways to reduce the cost of Medicare and Medicaid. The Alzheimer’s Association predicts that the direct cost of caring for individuals with Alzheimer’s will total more than $200 billion in 2013 alone, with nearly $150 billion of that spending expected to come from Medicare and Medicaid. Increased investments in medical and health research will help improve the treatment and prevention of dementia and Alzheimer’s disease.

“We have wanted to see a $2 billion commitment to research, because we’ve seen what has happened in diseases like HIV/AIDS when a big financial commitment is made,” said Maria Carrillo, PhD, vice president of medical and scientific affairs at the Alzheimer’s Association, in the article. Over the same 10-year period that saw an increase in Alzheimer’s deaths, HIV/AIDS related deaths decreased 42%, according to the Alzheimer’s Association study.

This report shows that now is not the time to cut back on America’s investment in biomedical and health research. Contact your representatives and urge them to make research for health a higher national priority.

Speak up or Watch out: Why medical research is at risk with Sequestration

It’s all over the news: The federal government is headed for significant, across-the-board budget cuts. Sequestration, or 10 years of automatic spending cuts, is a self-inflicted consequence passed by Congress, aimed to be a drastic outcome of failing to agree on a federal deficit-reduction package. Some Members of Congress argue that the sequester will not have a significant impact; they claim that the 5.1% cuts made in 2013 are only a drop in the bucket and there is no need to worry. However, the amount of money that the National Institutes of Health will lose, $1.56 billion, could fund the entire National Institute of Mental Health for more than a year. Cuts to the National Science Foundation total $359 million, more than 80% of the entire FY12 budget from NSF for homeland security research, including emergency planning and response. Research!America’s fact sheet on the effects of sequestration on these agencies, as well as the Food and Drug Administration and Centers for Disease Control can be found here.

What will cuts to NIH, NSF and other agencies mean to biomedical and health research?

The NIH and NSF fund the basic science that fuels medical innovation and the health services research that enables smart policy making by all levels of government and by health care providers in support of high-quality health care delivery. The CDC funds an enormous range of research and public health services essential to the basic health and safety of Americans. Cuts to these agencies will compromise medical progress, stymie deficit reduction and render it more difficult to reinvigorate our economy. Cuts to public health funding, which is already inadequate, will degrade the foundation for safe and healthy communities across our nation. In short, these cuts will have dramatic impact on the health of our nation. Polls commissioned by Research!America consistently show that Americans highly value medical research and would even pay higher taxes if they knew the dollars would be devoted to that research. And we will never bend the health care cost curve without medical research to overcome disabling and costly conditions like Alzheimer’s and health services research to identify and evaluate viable and patient-sensitive cost savings strategies.

Finally, cuts to funding for biomedical and health research jeopardize the product of years of investment in our nation’s research capabilities. Those investments have produced the most sophisticated and productive medical research enterprise in the world. If funding declines, so will opportunities for young scientists. So will the capacity for our nation’s researchers to break new ground. So will the pipeline that fuels private sector innovation and jobs.

Think about it: Advances in ongoing and promising medical research will invariably be halted due to a lack of funds for these projects. One such project is ongoing research at Georgetown’s Lombardi Cancer Center in Washington, DC. There, researchers have worked for years on a preventative strategy for breast cancer focused on anti-estrogen treatment, and this work is ready to move into clinical trials. Without funding, this lifesaving research could be halted. A study recently published in the Journal of the American Medical Association shows that the frequency of metastatic breast cancer is on the rise in young women, a troubling trend in light of the threat to biomedical and health research funding.

So what can we do?

Contact your representatives in Congress and tell them how important it is to STOP sequestration! Click here to send an email now.

Sign the petition from AAAS to “Speak Up for Science.”

Share these resources with your professional network, and encourage your peers to speak up for research now!

A Weekly Advocacy Message from Mary Woolley: Cliff diving and appropriations, too

Dear Research Advocate,

Congress is back and there is talk of more stalemate, with support wavering for a deal to avert the fiscal cliff before the end of the year. Speaker John Boehner said early today that “no substantive progress has been made” on negotiations. Amazingly, inaction (going over the cliff) remains a possibility. The more likely scenario is a short-term fix that leaves the major decisions in the hands of the next Congress. In the midst of behind-the-scenes negotiations between congressional leadership and the White House, appropriators are talking about finalizing their bills before the end of the lame-duck session rather than waiting to revisit the current continuing resolution in the new Congress. They would likely use an omnibus appropriations bill, creating a vehicle for funding the damage from Superstorm Sandy. If this scenario plays out — and it’s a long-shot — it is possible that more cuts to research and other discretionary spending will be embedded in the omnibus.

This is yet another compelling reason to get involved now in research advocacy. At every turn in the current policymaking process, biomedical and health research is at risk. If you have not called your senators and congressional representative, now truly is the time. In addition, you can take advantage of the sample materials in our Save Research online toolkit to personalize op-eds, letters to the editor, social media messages and more.

If you do decide to speak up, you will be joining a movement that is gaining traction. For the first time ever, our community has been included in a list in an Associated Press article that features defense and oil and gas interests as those being heard in Washington. Indeed, a broad array of media has been picking up our story.

An op-ed in Politico co-authored by six former CDC directors urges Congress to maintain CDC funding amidst the deficit reduction negotiations. The piece highlights the critical role that CDC plays in protecting public health, citing the recent fungal meningitis outbreak. The directors register concern about a system so tightly constrained that it can’t respond to a crisis without compromising health in other areas. Further cuts would be catastrophic. A similar point about the dangers of compromising key public health capacity was made by Dr. Herb Pardes in an opinion piece in the New York Daily News. This is the time to state your case; tell the media, your elected representatives and anyone who will listen just what is at stake.

Sincerely,

Mary Woolley