Monthly Archives: March, 2013

Lancet Publishes Series on Drug-Resistant Tuberculosis

On March 24, World Tuberculosis Day, the Lancet published a series of papers on the need to combat drug-resistant tuberculosis. Cases of drug-resistant TB are on the rise, posing a growing threat to the health of populations in all parts of the world.

The series consists of six papers written by international experts in the tuberculosis field, including Professor Alimuddin Zumla, Director of the Centre for Infectious Diseases at the University College London Medical School and Dr. Marco Schito at the National Institute of Allergy and Infectious Diseases. Some papers focus on TB diagnostics, highlighting advances such as the Xpert MTB/RIF test as well as the dire need for new affordable and effective diagnostics that can detect drug-resistant strains of the disease. One paper focuses on the more technical aspects of the disease and identifies the need for additional funding to research biomarkers for drug-resistant TB. Yet another paper discusses the importance of integrated health service and control efforts, as countries are facing a high burden of TB as well as non-communicable diseases such as diabetes and cancer. Finally, the last two papers discuss the importance of community engagement in research and the need for visionary political leadership to advance global efforts to control TB.

Taken together, this series not only warns of the danger of the TB, but of the danger of inaction. If we are to make progress in the global fight against TB, we must take some of the recommendations for research and control efforts laid out in these papers. It will take concerted action from political leaders, health policy makers, funders and researchers to stem the growing threat of drug resistant TB.

-Morgan McCloskey, global health intern

A Weekly Advocacy Message from Mary Woolley: We can’t let up now

Dear Research Advocate,

Glimmers of hope can be found in the dire funding situation we face under sequestration. The continuing resolution (C.R.) funding the government through the end of the fiscal year (September 30) included very small increases for NIH, CDC, NSF and FDA; AHRQ was flat funded. But the fact remains that these increases were overwhelmed by the effect of sequestration, which remains in place and will continue to weigh us down for 10 years unless overturned. Our champions in Congress are speaking out and taking a stand on behalf of research as the budget negotiation proceeds. Reps. McKinley (R-WV) and Markey (D-MA) have co-authored a letter to House appropriators calling for $32 billion for NIH in FY14, a $1.5 billion increase. Take action right away and urge your representatives to sign on! Rep. Steve Cohen (D-TN) delivered a powerful floor speech highlighting the bipartisan importance of investing in NIH. In the Senate, Sens. Durbin, Mikulski, Moran and Cardin sponsored an amendment to the budget resolution calling for increased investment for biomedical research at the NIH. While this move is largely symbolic, it demonstrates the level of bipartisan commitment of our champions. You can view Senator Durbin’s statement here as well as the Research!America statement. And special thanks are due to Senator Harkin for his effort to provide NIH with a $244 million increase as part of the C.R. His sustained leadership has helped in so many ways to sustain NIH through good times and bad. Read our statement on his amendment here.

Congress is on recess and getting an earful from their constituents. A new public opinion poll shows that people are extremely angry at Congress but don’t see that sequestration is going to be a problem. That’s why it’s important to connect the dots. Hooray for a flurry of articles published in newspapers in Baltimore, Lancaster (PA), Los Angeles and Seattle —all emphasizing the damage being done by sequestration. More are called for! In a pulling-no-punches editorial in Science, Dr. Bruce Alberts lays out his concerns for the future of research, a future that is closely linked to the decisions our elected officials will make over the coming months. He invites responses; you can weigh in.

Many of you may be aware of our upcoming panel discussion on April 8 — Conquering Pain & Fighting Addiction: Policy Imperatives to Combat a Growing Health Crisis — featuring thought leaders on issues relating to pain and addiction. This a critical topic of growing national importance with a major role for research — I hope you can join us. Register here. Earlier in the day, the entire staff of Research!America will join tens of thousands of advocates at the Rally for Medical Research on the steps of the Carnegie Library in Washington, DC. Let’s all join forces that day to drive home the message that research must be a higher national priority.

Sincerely,

Mary Woolley

Autoimmune Awareness

Throughout March, patient and research advocacy groups are observing Autoimmune Awareness Month. There are an estimated 23.5 million Americans suffering from one of nearly 100 autoimmune diseases. Some autoimmune diseases are rare but more common autoimmune disorders include Type 1 diabetes, Crohn’s disease and lupus.

Autoimmune disease results from the body’s natural defense system attacking healthy cells. The target of this attack can be a specific organ, such as insulin-producing cells in the pancreas in Type 1 diabetes, or it can be more widespread throughout the body, as is the case for patients living with lupus or rheumatoid arthritis. Continue reading →

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

Guest Post: Harold L. Paz, MD, of Penn State College of Medicine

H.L. Paz, MDThe following post is an excerpt from a recent op-ed  by Harold L. Paz, MD, CEO of Penn State Milton S. Hershey Medical Center; senior vice president for health affairs, Penn State; and dean of the Penn State College of Medicine. You can read the full op-ed, published in several regional papers, here. The Penn State College of Medicine is a Research!America member.

Penn State Milton S. Hershey Medical Center is deeply concerned about the impact that sequestration will have on programs that are vital to the health of those we serve, including medical research supported by the National Institutes of Health (NIH).

As central Pennsylvania’s only academic health center we have a responsibility to serve our community by producing the next generation of health care professionals and biomedical scientists, discovering new medical knowledge that will improve health, and providing state-of-the-art care for serious or life-threatening conditions. Once sequestration takes effect on April 1, 2013, it will begin to take a toll on our efforts to fulfill those missions.  Continue reading →

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.

March 22 is World Water Day

Nearly 11% of the world’s population does not have access to clean drinking water. This represents a tremendous burden on global health, as almost 2 million children die from water-borne illnesses each year. Improvements in sanitation and the availability of clean water are essential to improve health around the world.

America has been a leader in clean water legislation and water-borne disease research. The late Paul G. Rogers, Research!America’s former chair, was a key leader in the passage of environmental legislation, including the Safe Drinking Water Act, during his tenure in Congress. Today, American investment in research is providing new therapies and prevention strategies for water-borne illnesses like schistosomiasis and Guinea worm disease, both neglected tropical diseases. Learn more about neglected tropical diseases here.

Here are some interesting facts for World Water Day 2013:

  • Did you know that agriculture accounts for roughly 80%of the world’s water consumption?
  • For every $1 invested in water and sanitation, an average of $4 is returned in increased productivity. (Source: WHO, Geneva, 2012: page 4)
  • Every year, around 60 million children in the developing world are born into households without access to sanitation. (UN Water)
  • 443 million school days are lost each year due to water-related diseases.

Visit UN Water’s World Water Day site or see a list of UNICEF partner organizations to learn more about water, sanitation and hygiene issues around the world.

Statement from Research!America President and CEO Mary Woolley on Bipartisan Action Spotlighting NIH Funding

Research!America President and CEO Mary Woolley Applauds Bipartisan Action Spotlighting NIH Funding

March 22, 2013

Research!America commends Sens. Dick Durbin (D-IL), Barbara Mikulski (D-MD), Jerry Moran (R-KS) and Ben Cardin (D-MD) for their vision, their leadership and their commitment to bipartisanship as evidenced by their joint amendment calling for robust investment in medical research. We urge all senators to cosponsor and vote for this significant amendment. The National Institutes of Health funds noncommercial research at universities and other institutions across our nation, research that catalyzes private sector development of new preventative measures, diagnostics, treatments and cures for disabling and deadly diseases. This chain reaction lies behind the myriad medical advances we rely on today and is the path to the continued medical progress we need to overcome Alzheimer’s disease, cancer and other insidious health threats. That these senators came together in support of increased funding for the NIH signals their commitment to saving lives and powering our economy. We hope it will also spur bipartisan action to reverse sequestration, which, if allowed to stand, all but ensures the decline in our nation’s medical research pipeline.

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.

A Weekly Advocacy Message from Mary Woolley: Continuing Resolution Passes; Sequestration Unaffected

Dear Research Advocate,

Congress has passed a spending bill for what remains of the current fiscal year, which ends September 30. Preliminary agency funding levels have been reported by Nature. The appropriations process remains important for making up some small amount of the ground lost to sequestration, but as long as sequestration remains the law of the land, annual cuts to NIH, FDA and our nation’s other health research agencies are all but assured; and with it, the insidious ripple effect of damage to grantees, vendors, and the pharma, bio and device industries that partner with researchers to develop the products patients await. That’s the bottom line. We must remind our representatives that sequestration is not some “new normal” we will adjust to, it is a costly mistake! We must remind them that the longer it takes to correct that mistake, the more damage will be done.

As this letter is written, the Senate is debating a budget resolution for FY14. One or more amendments related to NIH are likely to be considered. While it is unlikely any of these amendments will result in increased funding next year – they are likely to be symbolic in nature – we should not dismiss them as unimportant. Singling out medical research funding for consideration and discussion during the budget debate lays the groundwork for more concrete action going forward. As does Congresswoman Allyson Schwartz’s (D-PA) introduction of a stand-alone bill, the “Inspiring Scientific Research and Innovation Act,” calling for a stunning $3 billion increase to NIH funding. Prospects for this bill are slim, but if enough advocates urge their representatives to fashion similarly bold statements of support of this nature, we can turn this around.

American priorities and American progress are on the line more than ever, yet Congress persists in acting like political parties scoring points instead of conducting the public’s business. This point and more were addressed by Research!America’s chair, The Honorable John Porter, at our Advocacy Awards dinner. Many of you have asked to see this speech, which was highlighted in Roll Call. Please contact policy makers to speak out against sequestration; better yet – contact them today and then go visit them in-district next week while they are on recess. Many of our members have or will soon engage in “Hill Day” visits with many advocates – and the timing could not be better. Our fact sheet on sequestration as well as the flyer we developed calling for cures, not cuts, are both good leave-behinds.  Developing new champions is one goal of those Hill Days, I know. Yesterday, in partnership with United for Medical Research, we held a breakfast meeting for freshman Members of Congress to meet NIH Director Dr. Francis Collins. Dr. Collins provided an overview of the opportunities for research and highlighted the challenges facing NIH, including sequestration. Please be sure to thank those who attended and use the opportunity to reinforce the local case for research.

Making the local case is equally if not more important in district as well as on Capitol Hill. This is where the media can amplify the story. Dismal news about the impact of sequestration on our nation’s world class universities is in fact being heard nationwide. Johns Hopkins University’s Dr. Carol Greider, a former Research!America Board member and Nobel laureate, was quoted in Reuters about the cutbacks her lab has faced, which have prevented her from hiring promising young researchers. An article in Fox News cites concerns from Research!America Board member Dr. Larry Shapiro, who is witnessing anxiety among young researchers at Washington University School of Medicine in St. Louis.  Dr. Arthur Levine of the University of Pittsburgh writes in the Pittsburgh Post-Gazette about the staffing cuts and job losses that could occur, with some of the worst impacts hitting young investigators. The media remains hungry for stories about the impact of these cuts. Write an op-ed or pitch a story to your state or local paper. As always, let us know how we can help.

April 8 is coming right up. If you haven’t already planned to join the Rally for Research here in Washington, make it a priority. As a measure of the level of urgency of speaking out for research and against sequestration, the American Association for Cancer Research (AACR) is, for the first time ever, shutting down their annual research conference so that all 18,000 attendees can participate. And they have extended the Rally widely, to encompass all research and stakeholders in research, to present a comprehensive perspective of health research. This is the kind of game-changing advocacy called for right now. Our Board Chair, Congressman John Porter, will be speaking at the event along with other advocates. The challenges and opportunities before us demand not just a team effort, but a HUGE team effort. Lend your talent and your time. We’ll drive across the goal line together.

Sincerely,

Mary Woolley

UN Foundation Announces Global Mom Relay

The United Nations Foundation is an unwavering supporter of global health, from prevention of malaria deaths to polio eradication (in partnership with Research!America, the Global Health Council and others the UN Foundation held a briefing about the importance of the polio vaccine in 2011). With support from Johnson & Johnson and the Bill & Melinda Gates Foundation, their latest initiative is the Global Mom Relay, an innovative campaign to raise money and awareness in support of women and children’s health around the globe. Until May 8, there will be a daily story about motherhood on the Huffington Post from a variety of global authors. Each time a relay post is shared via Facebook, Twitter or email, Johnson & Johnson (a Research!America member) and the Gates Foundation (a long-time Research!America supporter) will donate $5 to one of four UN Foundation initiatives helping women and children around the globe: Girl Up, the Global Alliance for Clean Cookstoves, Mobile Alliance for Maternal Action and the Shot@Life campaign.

Please visit www.unfoundation.org/globalmomrelay/ to learn more and share today’s post!

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.

Update: “Functionally Cured” of HIV

A few weeks ago, we wrote about a Mississippi toddler who was “functionally cured” of HIV. Now, there is one more reason to celebrate: French researchers identified 14 adults who have been functionally cured of HIV as well. The adults received antiviral treatment within a few months of infection, but all stopped treatment at some point for a variety of reasons. Despite discontinued treatment, researchers found that these adults had extremely low levels of HIV and that their immune systems were controlling the infection without drugs. Although further research is necessary, scientists hope that other adults may be able to cease antiviral treatment and live healthily without drugs. This story is another crucial step in the global fight against HIV/AIDS and represents the importance of continued research investments to discover innovative cures for HIV.

—Morgan McCloskey, global health intern