Monthly Archives: April, 2013

Supreme Court hears arguments on case with far-reaching implications for genetic research

The much-contested question of whether or not a gene can be patented is under judicial scrutiny once again. The U.S. Supreme Court listened to oral arguments today regarding Myriad Genetic’s patent of two genes, BRCA1 and BRCA2, which have been linked to increased cancer risk in both women and men.  The American Civil Liberties Union is challenging this patent on behalf of a group of researchers, medical groups and patients. The timing of the hearing is rather serendipitous, just one day after the 10th anniversary of the completion of the Human Genome Project. The Human Genome Project, a jointly funded venture from the Department of Energy and the National Institutes of Health, has opened the door to a wide array of genetic tests and targeted interventions. Continue reading →

Health Economics Research: where social and medical sciences meet

How much financial benefit do we reap from biomedical research? What are the economic gains that result from introduction of new medications, changes to personal health behavior or reworking the Medicare and Medicaid health systems? These and other questions were discussed at a recent Capitol Hill briefing on health economics research co-sponsored by Academy Health, Research!America and other organizations. In an era of skyrocketing medical costs, this type of research can provide vital information to policy makers and health care providers to reign in the costs of healthcare without compromising the quality of patient care. Continue reading →

April is National Minority Health Disparities Month

The Department of Health and Human Services Office of Minority Health and the Centers for Disease Control and Prevention have valuable resources on their websites in recognition of National Minority Health Disparities month. This year, CDC and HHS are focusing on health equity and access to affordable healthcare for all.

Health disparities can result from a number of factors – limited access to quality, affordable health care and preventative services, physical activity and fresh food and produce, and unhealthy environments at home and work.

In 2009, health disparities among African-Americans and Hispanics cost private insurers an additional $5.1 billion. Indirect costs associated with unscheduled absences and productivity losses associated with family and personal health problems cost U.S. employers $225 billion annually.  Medical and health research can reduce disparities, improve health care delivery and drive down health care costs. A diverse healthcare work force as well as multicultural training for healthcare professionals will also improve patient care.

Click here to learn more about minority health disparities and what can be done to promote health equity for all Americans. Also visit the CDC’s website to read about programs to reduce minority health disparities; their initiatives include vaccination strategies to reduce childhood infection and diabetes educational programs.

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

CDC Responds to H7N9 Outbreak in China

On April 8, the Centers for Disease Control and Prevention (CDC) activated its Emergency Operations Center (EOC) in response to the H7N9 influenza outbreak in China. H7N9 is the newest bird flu virus and has killed 8 and infected 20 other individuals in China. No cases have been found outside China, but the global health community, including CDC, is concerned because this is the first time this type of bird flu has been found in humans. Continue reading →

Statement from Research!America President and CEO Mary Woolley on President Obama’s FY14 Budget Proposal

The president’s FY14 budget proposal offers a lifeline for medical research to replace sequestration’s damaging footprints. The budget includes $31.3 billion for the National Institutes of Health, as well as increases for the Food and Drug Administration and National Science Foundation. These increases would take our nation in the right direction, but we’re concerned that budget proposals from Congress – one from each of the House and Senate – unlike the president, fail to reverse sequestration. Sequestration, 10 years of across-the-board spending cuts, will drag our nation down from its leadership position in research and development as other countries aggressively ramp up investments, attracting American businesses and young scientists concerned that federal funding is on the decline, that the U.S. no longer prioritizes research. Policy makers must start acting in the best interests of this nation and tackle tax and entitlement reform to end sequestration.

Our nation has the most sophisticated medical research ecosystem in the world; yet our elected officials have ignored the short- and long-term consequences of dismantling it via sequestration – more deaths from preventable diseases, increased joblessness and soaring health care costs as more Baby boomers become afflicted with Alzheimer’s, cancer, heart disease and other life-threatening, costly illnesses.

While the president’s budget increases federally-funded medical research, Congress and the administration must look more deeply into the consequences of dramatic cuts to Medicare Parts B and D, which cover crucial medical innovations including prescription drugs, biologics, and medical devices.  If Medicare undervalues these preventative, diagnostic, and treatment tools, access and innovation will both suffer. The counterproductive effect of slowed innovation and access barriers could be increased hospital and other health care costs. We’re also disappointed that the president’s budget cuts funding for the Centers of Disease Control and Prevention which is already operating on a severely depleted budget.  Cuts to the Agency for Healthcare Research and Quality which identifies waste and duplication in our health care system while combating deadly medical errors are also a strategic mistake.  Policymakers must tread carefully in the coming weeks to avoid decision-making that will endanger the health and economic prosperity of our country.

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Guest post: The MIT Science Policy Initiative visits Capitol Hill to support the future of research & development in the US

MIT-Washington DC-2013

CVD 2013 student delegation at the Capitol;  Photo Credit: Charles Haynes

Amidst difficult budget negotiations on Capitol Hill, on March 12 and 13, MIT students and postdocs traveled to Washington to sound a warning about the future of science and engineering research in this country if indiscriminate cuts to federal programs continue.

In addition to mostly flat funding in recent budgets, language in the Budget Control Act of 2012 calling for across-the-board cuts—known as “sequestration”—took effect on March 1. These cuts, in addition to the ongoing erosion of federal funding for scientific research, decrease America’s ability to maintain economic growth and remain globally competitive, the 17-person delegation from MIT urged in meetings with Members of Congress and their staff. This funding crisis is creating fiscal shockwaves that will echo through the innovation system for years to come.
Continue reading →

Rally for Medical Research: Building a grassroots movement to make medical research a higher national priority


Thousands of scientists, patients and research advocates gathered on the grounds of the Carnegie Library in Washington, DC, on April 8 to unite behind a call for increased funding for medical research. The Rally for Medical Research was organized by the American Association for Cancer Research in conjunction with their annual meeting and was supported by more than 200 partnering organizations — including Research!America. The program featured statements from patients and their families, scientists, policy makers, and research advocates. Cokie Roberts of ABC News and NPR, cancer survivor and research advocate, was the master of ceremonies. Continue reading →

Research!America Member Spotlight: American Sleep Apnea Association

This guest post comes from Edward Grandi, Executive Director of the American Sleep Apnea Association.

Edward Grandi, Executive Director, ASAAThe American Sleep Apnea Association, founded in 1990, is the only national nonprofit patient advocacy organization dedicated to educating the public about sleep apnea and supporting patients in treatment.

We are pleased to be a member of Research!America as it gives us an opportunity to help carry forward the message about the importance of sleep in medical research and to join with other organizations to promote the work of agencies like NIH, CDC and AHRQ to members of Congress.

The field of sleep medicine is still relatively young and research into the fundamental causes of sleep disorders is just beginning. The association’s research interests span from basic science into why and how we sleep to understanding clinical applications to improve sleep by correcting disorders. Continue reading →

Chronic Pain Ranks Well Below Drug Addiction as a Major Health Problem in New National Public Opinion Poll

High Percentage of Americans Concerned About Misuse of Pain Medication

A new national public opinion poll commissioned by Research!America shows only 18% of respondents believe chronic pain is a major health problem, even though a majority of Americans (63%) say they know someone who experienced pain so severe that they sought prescription medicines to treat it. Chronic pain conditions affect about 100 million U.S. adults at a cost of approximately $600 billion annually in direct medical treatment costs and lost productivity.   Continue reading →

Watch the Rally for Medical Research

Just because you’re not in Washington, DC doesn’t mean you can’t still watch the Rally for Medical Research! Cokie Roberts of National Public Radio will emcee the event featuring members of Congress, cancer survivors like actress Maura Tierney (ER, NewsRadio), leaders from the scientific community including NIH Director Francis Collins, MD, PhD, and  Research!America Chair, Hon. John Edward Porter.

Here’s the video:

Take a moment and contact your Congressperson and Senators today, tell them to make medical research a higher national priority!

Follow updates from the Rally on Twitter via @ResearchAmerica or #RallyMedRes.

New avian flu strain garners close attention from U.S. health agencies

The public health community is on alert over a new strain of avian flu that has made the jump from birds to people, resulting in six confirmed deaths in China.

“At this point it’s a matter of anxious waiting and good surveillance,” Research!America Board member Georges Benjamin, MD, executive director of the American Public Health Association, told Politico Pro.

Scientists from the Centers for Disease Control and Prevention are joining forces with other international researchers to track this new strain, H7N9. Thus far, the only infected individuals appear to have come into direct contact with sick birds, indicating that currently this new strain cannot be passed from person to person. Should the virus mutate and gain the ability to jump from one person to another, health officials will have a potentially dangerous situation on their hands. Continue reading →

Medical research is at risk

April is National Cancer Control Month, and there is no better time to step up and advocate for lifesaving medical research. A recent report from “PBS NewsHour” highlights the crippling effects of sequestration on funding for cancer research. The story of the Riggins laboratory is just one example of labs all over the country having to slow or stop promising research due to a lack of funding.

According to the American Cancer Society’s 2013 report, more than half a million Americans are expected to die from cancer this year alone. Continue reading →

A Weekly Advocacy Message from Mary Woolley: This is your BRAIN on research

Dear Research Advocate,

On Tuesday, the president announced a new $100 million brain research initiative (BRAIN) that will involve NSF, NIH and DARPA and include support from a number of independent research institutes and private foundations. The fact that the White House has announced this “moonshot” is an important sign that research is securing its rightful role as a top national priority, which is critical to our collective goal of eliminating sequestration and aligning research funding with scientific opportunity. The president will include BRAIN in his FY14 budget, which will be released April 10.

In CQ, House Majority Leader Eric Cantor (R-VA) expressed support for the BRAIN initiative but commented that it should be funded by redirecting money from social and political science programs, a sentiment echoed in a statement from Speaker John Boehner’s (R-OH) office. Social and political science programs are a critical piece of our nation’s research portfolio. We are cosponsoring a Hill briefing on this topic Friday — Economics Research: Saving Lives and Money. Leader Cantor has also announced a new bill that would increase NIH funding by $200 million in order to support new research that may include pediatric diseases like autism, paying for it by redirecting public funding away from presidential campaigns.

Sequestration remains a topic generating huge interest in the media. Our community is succeeding in making sure the impact of sequestration on science is part of the conversation. USA Today ran an article describing how reduced funding and success rates for basic research is leading young researchers away from careers in academic science. The Huffington Post published a thought-provoking op-ed co-authored by Drs. Neal Lane and Peter Hotez at Rice University and Baylor College of Medicine, respectively. They discuss the importance of creating a cadre of scientist-advocates or “civic-scientists” in order to engage with the public and policy makers. In The Hill, Dr. Leroy Hood, president of the Institute for Systems Biology, describes how medical breakthroughs can help solve the budget crisis through a new era of P4 medicine, which could deliver lifesaving cures and treatments to lower health care spending while powering our economy. PBS’ “NewsHour” and MSNBC’s Chris Hayes covered sequestration’s impact on science last evening and on their websites. Local media are highlighting how sequestration could impact individual institutions, such as this article illustrating the impact on front-line medical research. For those of you at institutions that have not as yet been covered by the media, now is the time to write an op-ed or reach out to your local newspaper. We can help; just ask.

The next big statement the research community will be making about the importance of research will be the Rally for Medical Research on April 8. I hope to see you there! Our board chair, former Congressman John Porter, will be among the many research champions speaking out  at the event sponsored by the American Association for Cancer Research (AACR). We are working to continue the momentum of the Rally so that the value of bringing together so many organizations (175 and counting) can be leveraged on a continuing basis.

Watch for our release of a new poll in conjunction with a panel discussion to be held on Capitol Hill, Conquering Pain & Fighting Addiction, on April 8 at 4 p.m. Conquering chronic pain without fear of addiction is a goal research can help address. These are topics that are underappreciated even as they are highly charged, causing great anguish as well as great suffering.

Sincerely,

Mary Woolley

NTD Highlights of the Week: April 4th

END7 recently released the above video aimed at raising the profile of neglected tropical diseases. END7 is a Global Network campaign which raises money to increase access to NTD treatments and strives to end seven of the most common NTDs by 2020. NTDs affect millions each year, so it is extremely important to increase awareness of these diseases among the public and major political and philanthropic leaders.

In addition to the seven NTDs targeted by the campaign, it is critical that momentum continue to build around research and control efforts for other NTDs such as Chagas, dengue and leishmaniasis. Nature recently published results from a leishmaniasis study in Nepal, which indicated that leishmaniasis drugs are not effective in one-fifth of patients. Although the study doesn’t cite a particular reason for the drug failures, many suspect that the disease is becoming resistant to the most commonly used medication. With treatment failure rates up to an alarming 70% in areas of India and Brazil, drug resistant leishmaniasis is an increasing global concern. In addition, NTDs are on the rise here at home. Texas news outlets reported that 60-80% of animals in southern parts of the state are infected with Chagas, and experts warn that the overall risk of infection has increased. Florida officials have also confirmed that dengue has officially re-established itself in the state.

Despite these challenges, progress is being made in the fight against NTDs. Inviragen, a vaccine research organization based in Colorado, recently began Phase II clinical trials for its dengue vaccine candidate. The vaccine was well tolerated in the first phase of clinical trials and experts hope that Phase II will prove its efficacy and safety in young children.