Monthly Archives: May, 2014

A Weekly Advocacy Message from Research!America: The appropriations dance begins. Are you joining in?

Dear Research Advocate:

For every step forward in the appropriations process, there tends to be a stumble backwards. The House has begun floor debate on HR 4660, the Commerce, Justice, Science, and Related Agencies Appropriations Act, 2015. The bill calls for a $237 million increase over FY 14 for the National Science Foundation (NSF), totaling $7.4 billion in budget authority. This increase (approximately 3%) is $150 million higher than the figure included in the President’s budget (a higher level that the President has endorsed) and is emblematic of the priority that should also be assigned to funding for the National Institutes of Health and our nation’s other research agencies.

Unfortunately, not all the news relating to NSF is good. Last night, the House Science Committee passed, on a party-line vote, legislation that authorizes a lower funding level for NSF than House appropriators allocate to it which can throw the funding process into disarray. The measure introduces political and ideological considerations into the allocation of science resources, a dangerous precedent that would inevitably stifle the progress that arises from free-flowing scientific exploration; and cuts another $50 million from social and behavioral sciences and economics (SBE) research. This is a perfect example of why scientists must advocate; they are uniquely able to explain the value of the research that is at risk and the consequences of tamping out scientific freedom. Continue reading →

Working Together for Research

By Margaret Foti, PhD, MD (h.c.), Chief Executive Officer, American Association for Cancer Research

fotiEach year, the American Association for Cancer Research (AACR) is pleased to support and highlight May as National Cancer Research Month. Throughout this special month, the AACR celebrates the accomplishments of the scientific community, advocates for funding increases for the National Institutes of Health (NIH) and the National Cancer Institute (NCI), and spotlights the need for continued improvements in patient care.

There’s no doubt that tremendous progress has been made against cancer. People who have been diagnosed with cancer are living longer today than ever before. The five-year survival rate among adults who have had cancer (all cancers combined) is about 68 percent—an increase of 19 percent since 1975. For all childhood cancers combined, the five-year survival rate is 83 percent, an increase of 30 percent since 1975.

But much remains to be done. Almost 1,600 people in the United States die from cancer every day. The toll in medical costs, lost productivity, and human suffering is immense and will in fact grow as the “baby boomer” generation gets older. Continue reading →

A Weekly Advocacy Message from Research!America: Flat won’t get the job done

Dear Research Advocate:

Today, Chairwoman Barbara Mikulski (D-MD) released the Senate’s 302(b) allocations, which were approved by the Appropriations Committee. As you know from last week, the House 302(b) allocation for the Labor-HHS subcommittee is approximately $1 billion less in fiscal year 2015 than it was in FY 14.The Senate’s allocation for FY 15 is roughly the same as it was in FY 14. The bottom line is that, as expected, we have our work cut out for us to achieve the increases needed for the National Institutes of Health (NIH) and our nation’s other health research agencies. Fortunately, Senator Mikulski and other leaders from both sides of the aisle understand the importance of investing in research to drive U.S. innovation.  That doesn’t reduce advocates’ workload, but it makes success more than a longshot.

Earlier this week, both the House and the Senate Appropriations subcommittees on Agriculture considered bills that would fund the Food and Drug Administration (FDA) in FY 15. The House version calls for a $23 million increase (less than 1%) while the Senate version provides a $36 million increase. While appropriators deserve credit for finding additional dollars for the FDA given overall FY 15 budget constraints, this agency’s responsibility for protecting the very safety of Americans requires more dollars than this.  Continue reading →

Clinical Research

Letter to the editor by Research!America VP of Communications Suzanne Ffolkes published in The New York Times in response to article, Labs Are Told to Start Including a Neglected Variable: Females” (May 14, 2014)

In addressing gender bias in biomedical and clinical research, it’s also important to close gaps in clinical trial participation among minorities to understand how different segments of the population respond to various treatments. When asked if they or someone in their family had ever participated in a trial, only 17 percent of Hispanics, 15 percent of African-Americans and 11 percent of Asian-Americans said yes in polling commissioned by Research!America, a nonprofit advocacy alliance.

This is primarily rooted in a history of distrust and lack of awareness, but attitudes appear to be evolving as more minorities express a willingness to participate in trials if recommended by a doctor or a health care professional.

Boosting enrollment among women and ethnic groups is critical to achieving better health outcomes for all Americans.

A Weekly Advocacy Message from Research!America: Long-term commitment, short-term action. We need both.

Dear Research Advocate:

In a terrific op-ed in the Sacramento Bee, Greg Sorensen, MD, CEO of Siemens Healthcare North America and Research!America board member, writes about a young girl, Kayla Saikaly, diagnosed with aplastic anemia at 13-years-old and the life-saving bone marrow transplant she received at Southern California’s City of Hope Hospital.

FASEB Vice-President elect and Director of the Human Genetics Program at Sanford-Burnham Medical Research Institute, Dr. Hudson Freeze, appeared on a segment of San Diego’s U-T TV daily program “The Roger Hedgecock Show” with Morgan Fischer, an 8-year-old girl with a disorder called hypophosphatasia that severely hinders proper bone formation. Dr. Freeze discussed a groundbreaking therapy that has enabled the growth of new bone tissue in Morgan and other patients with this rare disease, dramatically improving the quality of their lives.

Whether or not Congress fosters medical progress through robust research funding and policies incentivizing private-sector medical innovation is not an academic discussion. It’s decision-making that bears on the lives of real people. It’s about Kayla and Morgan.

The theme underlying Research!America’s Medical Progress NOW initiative is that as Congress considers a variety of proposals aimed at generating more medical progress in the future — supplemental funding strategies, ways to make the innovation pipeline work smarter and faster over time — there is an opportunity to take action this year to reinvigorate medical progress.  That opportunity is the FY15 appropriations process, and we ask appropriators to seize it.  Kids like Kayla and Morgan, Americans all over our country fighting for the chance to lead normal lives or simply hold on to the lives they have, can’t place their illnesses on pause while Congress chooses between long-term commitment and short-term action.  We need both.  We need FY15 appropriation levels that enable medical and health research to flourish, not flounder.  Read our letter to the leaders of the House and Senate Appropriations Committees here.  And please send a note to your representatives in Congress urging them to speak up about the need for medical progress now. Continue reading →

Informative Conversations Highlight Ask Your Candidates! Event in Atlanta

Election season is all about voters getting to know the candidates running for public office in their state.  Through town hall and other meetings, articles and editorials, advertisements and debates, voters obtain information about each candidate that can inform their decision-making at the polls. Ask Your Candidates! (AYC!), a voter education initiative launched by Research!America and terrific partners representing just about every segment of the medical and health research ecosystem, helps connect voters and candidates on the issue of America’s faltering commitment to medical progress. And AYC! did just that last Friday during its first event, a non-partisan meet-and-greet in Atlanta where candidates for U.S. Senate from Georgia discussed the role Congress plays in fueling U.S. medical innovation. The event, called “American Medical Progress: A Conversation with Candidates,” focused on the roles of the private sector and government in the research pipeline that discovers and develops lifesaving medical innovations. All of the candidates were invited, and remarks were delivered by three candidates – Art Gardner (R), Derrick Grayson (R) and Steen Miles (D) – and campaign representatives for Phil Gingrey (R), Jack Kingston (R), Michelle Nunn (D) and Branko Radulovacki (D). David Perdue (R) provided a statement that was read at the event. Click here for a transcript of the candidates’ remarks.

Continue reading →

Tell Congress that Americans should decide whether life-saving research is important

Research that protects kids and patients is on the chopping-block. Why?

Legislation is being developed in the House of Representatives that would severely restrict or eliminate the appropriations funding mechanism for the Agency for Healthcare Research and Quality, the Administration on Children and Families, the National Center for Health Statistics and other programs charged with protecting children and patients. If the legislation passes with no alternate means of keeping this work going, Americans would lose the benefit of research that translates medical progress into safe healthcare, makes sure new medical treatments reach patients in rural as well as urban areas, prevents deadly medical errors, and protects at-risk children in the foster care system.

Help nip this legislative effort in the bud.  Before Members of Congress take away access to information that saves the lives of children and other Americans, they should explain why saving those lives isn’t important.

Take action now.


A Weekly Advocacy Message from Research!America: The good, the bad, and the ugly

Dear Research Advocate:

Congress continues to pay particular attention to – and make decisions bearing on – the pace of medical progress. To briefly count the ways:

The Senate Labor-HHS Appropriations subcommittee heard testimony yesterday from agency heads within HHS about the significance of health-related spending, including spending on medical and health research. Read our written testimony here.

Congressman Upton (R-MI-06), the Chair of the House Energy and Commerce Committee (which has jurisdiction over authorizing legislation for NIH, CDC, FDA and AHRQ) and Congresswoman Diana DeGette (D-CO-01), a member of the Committee, launched their 21st Century Cures initiative with a roundtable discussion focused on identifying what actions are necessary to maintain our nation’s place as the world’s innovation leader. While Reps. Upton and DeGette are champions of research who should be commended for working to strengthen U.S. medical innovation, there is always the risk that Congress will veer into micromanagement of NIH, stymie FDA’s efforts to ensure that private sector innovators are rewarded for ensuring the safety and efficacy of their medical advances, or “hold off” on providing the funding needed to accelerate medial progress until  longer-term strategies are in place. Your participation can help make this effort a success, and the initiative has established an email address you can use if you wish to give input:

So that’s the good. Continue reading →

Medical Progress NOW Day of Action is tomorrow!

medprRemember that all day tomorrow, Tuesday May 6, is a social media Day of Action in conjunction with the Medical Progress NOW campaign. Join us on Twitter (#medprogressnow) and Facebook as advocates from around the nation ask Congress to focus on what can be done this year to accelerate medical progress, first and foremost by committing to a meaningful increase in funding for the National Institutes of Health in the FY15 appropriations process.  Share personal stories, relevant data and compelling visuals to make the case that insufficient funding costs lives.  Congress has the power to get NIH funding back on track. Help convince them to do it.

And please spread the word and share the link to the Day of Action toolkit with your professional and social networks for more information and sample messages.

Member Spotlight: The American Foundation for Pharmaceutical Education

By Ellen L. Woods, President of the American Foundation for Pharmaceutical Education

EWoodsThe American Foundation for Pharmaceutical Education (AFPE) is a national nonprofit organization located in Arlington, VA. AFPE was founded in 1942 and is the oldest pharmacy foundation in the nation. Now for more than 70 years, AFPE has provided fellowships, scholarships and grants to help educate thousands of the very best and brightest students in the pharmaceutical sciences in preparation for distinguished careers.

AFPE fellows engage in important, cutting-edge drug research that affects health outcomes in areas across the spectrum, from diabetes, heart disease, cancer, obesity, Alzheimer’s and other life-threatening conditions to medication adherence, arthritis, pregnancy, aging and smoking cessation. This sort of research lays the foundation for the health of generations to come.

The nation’s promising pharmaceutical scientists and their academic institutions have been significantly impacted by the diminished funding from federal agencies. AFPE and other nonprofit organizations attempt to fill that void. Students enrolled in pre-doctoral, PharmD and undergraduate programs in pharmacy look to AFPE to support their research endeavors. When not burdened by continuously seeking funding, researchers can more effectively spend time on research and innovation to improve public health. The investments AFPE makes in U.S. schools of pharmacy ultimately have a positive impact on patient health and fuel the economy.

AFPE is grateful for the unified voice and the partnership that Research!America provides to ensure that investment in research continues to keep pace with the need.

Visit AFPE website for more information or follow/like us on Facebook, Twitter and LinkedIn.


A Weekly Advocacy Message from Research!America: Rallying more defenders of science

Dear Research Advocate:

In recognition of his many accomplishments as a champion for research, Research!America Chair and former Congressman John Edward Porter was honored by the National Academy of Sciences with the Public Welfare Medal, the Academy’s most prestigious award. This well-deserved acknowledgment of Porter’s tireless efforts to advance innovation and engage scientists in advocacy should motivate advocates to follow his lead and speak up about threats to our nation’s research ecosystem. Read our statement on the award ceremony here.

In his remarks, Mr. Porter noted that “political judgment should never be allowed to be substituted for scientific judgment.” This point was particularly well-timed as political attacks on science, particularly health services research, continue unabated.

A case study from Louisiana highlights the importance of health research in saving lives. Children’s Hospital in New Orleans had an outbreak of a deadly hospital-acquired infection, mucormycosis in 2008-09. In response to several outbreaks in recent years, the CDC launched new targeted initiatives to help hospitals and health departments share information with the public about hospital-acquired infections.This type of public health work, based on health services research findings, is critical to delivering high quality care, reducing medical errors and protecting patients. Continue reading →